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| item_0 | item_0 | 0 | You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n</text>\nAlways use the tools/JSON response.\n\n```json | {'themes': [{'name': 'Experiencing relentless fatigue and energy crashes with post-exertion collapse', 'description': 'Participants describe extreme exhaustion where standing up or doing basic activities leads to complete energy drain, necessitating long periods of bed rest and causing severe impact on daily functioning, including being bedridden for months. This persistent fatigue cycles with relapses particularly after overexertion, underscoring the debilitating nature of their conditions.', 'code_slugs': ['persistent-fatigue-and-energy-drain', 'overexertion-and-relapse-cycle', 'relentless-pushing-despite-limitations']}, {'name': 'Struggling to accept illness limits while refusing to give up hope', 'description': 'Participants reveal a tension between denial and acceptance of chronic illness limitations. They maintain a positive and obstinate mindset, resisting the notion of permanent disability. Despite setbacks and long-term fatigue, they sustain hope, learning lifestyle changes and gradual self-awareness to manage symptoms while holding onto the belief of eventual remission rather than cure.', 'code_slugs': ['realization-to-accept-lifestyle-changes', 'maintaining-hope-and-positivity-despite-chronic-illness', 'self-awareness-to-avoid-overexertion']}, {'name': 'Embracing brain retraining programs to regain control and recovery', 'description': "Participants initially skeptical of brain-based recovery methods, come to accept and engage with brain retraining that addresses protective 'fight or flight' responses encoded in the body’s genes. They find validation and structured approaches that enable confidence and early positive signs, with brain retraining experienced as a crucial part of their recovery journey and self-healing process.", 'code_slugs': ['brain-retraining-as-a-recovery-path']}, {'name': 'Learning boundaries and managing social demands to conserve energy', 'description': 'Participants emphasize the importance of setting clear boundaries to avoid energy depletion, such as letting non-essential calls go to voicemail and managing people-pleasing tendencies. They highlight struggle and growth in learning to say no and delay tasks, balancing social demands with personal health needs to prevent relapse and better manage chronic fatigue symptoms.', 'code_slugs': ['learning-boundaries-to-manage-energy']}, {'name': 'Difficulty with genuine rest and retraining habits for meaningful relaxation', 'description': "Participants report difficulty with standard relaxation and meditation practices, struggling to let go and genuinely rest. They describe the challenge of retraining their minds to value and consistently implement 'real rest' like naps or meditation, essential for recovery but alien to ingrained habits and mental states shaped by chronic fatigue.", 'code_slugs': ['difficulty-with-relaxation-and-rest']}, {'name': 'Frustration and emotional challenges from others misunderstanding illness and recovery', 'description': 'Participants express ongoing emotional struggle when others minimize or fail to understand their illness experience and recovery process. They describe feelings of frustration, flaring up, and limited patience with ignorance or misjudgment, especially from those who never had the illness or who challenge their lifestyle adaptations, revealing a significant social and psychological burden.', 'code_slugs': ['frustration-with-misunderstanding-by-others']}]} | {'themes': [{'name': 'Experiencing relentless fatigue and energy crashes with post-exertion collapse', 'description': 'Participants describe extreme exhaustion where standing up or doing basic activities leads to complete energy drain, necessitating long periods of bed rest and causing severe impact on daily functioning, including being bedridden for months. This persistent fatigue cycles with relapses particularly after overexertion, underscoring the debilitating nature of their conditions.', 'code_slugs': ['persistent-fatigue-and-energy-drain', 'overexertion-and-relapse-cycle', 'relentless-pushing-despite-limitations']}, {'name': 'Struggling to accept illness limits while refusing to give up hope', 'description': 'Participants reveal a tension between denial and acceptance of chronic illness limitations. They maintain a positive and obstinate mindset, resisting the notion of permanent disability. Despite setbacks and long-term fatigue, they sustain hope, learning lifestyle changes and gradual self-awareness to manage symptoms while holding onto the belief of eventual remission rather than cure.', 'code_slugs': ['realization-to-accept-lifestyle-changes', 'maintaining-hope-and-positivity-despite-chronic-illness', 'self-awareness-to-avoid-overexertion']}, {'name': 'Embracing brain retraining programs to regain control and recovery', 'description': 'Participants initially skeptical of brain-based recovery methods, come to accept and engage with brain retraining that addresses protective 'fight or flight' responses encoded in the body’s genes. They find validation and structured approaches that enable confidence and early positive signs, with brain retraining experienced as a crucial part of their recovery journey and self-healing process.', 'code_slugs': ['brain-retraining-as-a-recovery-path']}, {'name': 'Learning boundaries and managing social demands to conserve energy', 'description': 'Participants emphasize the importance of setting clear boundaries to avoid energy depletion, such as letting non-essential calls go to voicemail and managing people-pleasing tendencies. They highlight struggle and growth in learning to say no and delay tasks, balancing social demands with personal health needs to prevent relapse and better manage chronic fatigue symptoms.', 'code_slugs': ['learning-boundaries-to-manage-energy']}, {'name': 'Difficulty with genuine rest and retraining habits for meaningful relaxation', 'description': 'Participants report difficulty with standard relaxation and meditation practices, struggling to let go and genuinely rest. They describe the challenge of retraining their minds to value and consistently implement 'real rest' like naps or meditation, essential for recovery but alien to ingrained habits and mental states shaped by chronic fatigue.', 'code_slugs': ['difficulty-with-relaxation-and-rest']}, {'name': 'Frustration and emotional challenges from others misunderstanding illness and recovery', 'description': 'Participants express ongoing emotional struggle when others minimize or fail to understand their illness experience and recovery process. They describe feelings of frustration, flaring up, and limited patience with ignorance or misjudgment, especially from those who never had the illness or who challenge their lifestyle adaptations, revealing a significant social and psychological burden.', 'code_slugs': ['frustration-with-misunderstanding-by-others']}]} | [(type, chatter), (results, {'codes': prompt="You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n</text>\nAlways use the tools/JSON response.\n\n```json" output={'codes': [{'slug': 'persistent-fatigue-and-energy-drain', 'name': 'Persistent fatigue and energy drain on standing', 'description': 'Participant describes extreme exhaustion and a complete drain of energy when trying to stand after lying down, leading to being bedridden for 18 months. This fatigue persisted with partial recovery but never complete, impacting daily functioning for many years.', 'quotes': ["'i was there for the next eighteen months was in bed ... i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely'", "'i was able to live a fairly good life but always tired constantly tired'"]}, {'slug': 'overexertion-and-relapse-cycle', 'name': 'Overexertion leading to relapse and worsening symptoms', 'description': 'Participant describes a cycle of pushing herself too hard (e.g. walking excessively) which led to picking up viruses and relapse back to debilitating fatigue forcing retirement and severe activity limitations.', 'quotes': ["'then i started overdoing things again i was walking like ten miles every day ... i picked up a couple of viruses ... i woke up ... i just can't get out of bed i can't do this again'", "'i actually had to retire at that stage and then being retired ... i kept pushing myself pushing myself'"]}, {'slug': 'relentless-pushing-despite-limitations', 'name': 'Relentless pushing through fatigue despite physical limits', 'description': 'Despite exhaustion and physical inability to perform basic tasks, participant kept pushing herself to walk and exercise daily, even waking early to get dressed for walking before breakfast, leading to further energy depletion.', 'quotes': ["'i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes ... were in the bathroom ... i just went walking i'd be back by seven eight nine o'clock'", "'then i couldn't really do anything for myself ... i had to lie down because i couldn't i didn't have the energy to cook or anything else'"]}, {'slug': 'realization-to-accept-lifestyle-changes', 'name': 'Realization and acceptance of necessary lifestyle changes', 'description': 'Participant early on did not accept diagnosis fully, maintained denial to an extent, but later realized she needed to make significant lifestyle changes to manage her illness rather than hoping to return to previous activity levels.', 'quotes': ["'i'm not going to give into it but i am going to have to make life changes ... my life is going to have to change from that point of view'", "'part of it was just ignorance be part of it'"]}, {'slug': 'brain-retraining-as-a-recovery-path', 'name': 'Embracing brain retraining as a key to recovery', 'description': "Initial skepticism toward brain retraining shifted to acceptance after understanding it addressed body’s protective response and mental 'fight or flight' mode, leading to participation in program and positive initial results within two weeks.", 'quotes': ["'my first reaction was oh no raylan no when do you start telling me it's all on my brain'", "'when he explaining ... your body has switched down some of the genes ... you're stuck in this fight too much ... it just started making sense'", "'i contacted jason and went onto his program because it actually really made sense'"]}, {'slug': 'learning-boundaries-to-manage-energy', 'name': 'Learning to set boundaries to manage energy and avoid overcommitment', 'description': 'Participant emphasizes importance of setting personal boundaries like letting phone calls go to voicemail to prevent energy drain and managing social demands, as well as self-monitoring to stop before reaching exhaustion.', 'quotes': ["'if my phone rings i let it go to voicemail so i can deal with it when i want to'", "'learning boundaries the hardest for me was learning boundaries'"]}, {'slug': 'difficulty-with-relaxation-and-rest', 'name': 'Difficulty with relaxation and understanding true rest', 'description': "Participant struggles with relaxation practices like meditation and acknowledges need to retrain herself to understand and accept 'real rest' familiar to healthy individuals but challenging for her to implement consistently.", 'quotes': ["'i'm not good at relaxing ... people say do meditation and this meditation is something i just ... struggled with it'", "'now i make myself every day lay down and take a nap or do some meditation ... i'm like real rest'"]}, {'slug': 'frustration-with-misunderstanding-by-others', 'name': 'Frustration and occasional anger toward others’ misunderstanding of illness', 'description': 'Participant feels annoyed and flares up when people minimize or misunderstand her illness or recovery, particularly those who never had the illness or who judge her lifestyle choices, emphasizing emotional toll of misunderstanding.', 'quotes': ["'when people say silly things sometimes ... i can flare up'", "'i know what i've been through ... when somebody minimizes it you can think no'"]}, {'slug': 'maintaining-hope-and-positivity-despite-chronic-illness', 'name': 'Maintaining hope and positivity despite chronic illness challenges', 'description': 'Participant highlights her positive and obstinate personality as key factors in her refusal to accept permanent disability and her sustained belief in recovery and improvement despite long-term severe illness.', 'quotes': ["'i'm just a very positive person i think i'm also obstinate'", "'never ever felt ... i was almost like in denial'"]}, {'slug': 'self-awareness-to-avoid-overexertion', 'name': 'Developing self-awareness to avoid overexertion and manage symptoms', 'description': 'Participant stresses importance of listening to body signals, recognizing triggers, and adjusting activities in timely fashion to prevent relapse and maintain health improvements.', 'quotes': ["'i've learnt to listen to myself listen to my body ... work out what my triggers are'", "'i can stop myself before i actually get to the stage where i'm really pushing pushing boundaries'"]}]} completion={'id': 'chatcmpl-COIs4g22I8GSzveEPF1Sl8o9gaZbj', 'created': 1759908448, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"codes":[{"slug":"persistent-fatigue-and-energy-drain","name":"Persistent fatigue and energy drain on standing","description":"Participant describes extreme exhaustion and a complete drain of energy when trying to stand after lying down, leading to being bedridden for 18 months. This fatigue persisted with partial recovery but never complete, impacting daily functioning for many years.","quotes":["\'i was there for the next eighteen months was in bed ... i felt like i had energy and i think i\'ll go and bake a cake the minute i stood up i just couldn\'t do anything i just drained of energy completely\'","\'i was able to live a fairly good life but always tired constantly tired\'"]},{"slug":"overexertion-and-relapse-cycle","name":"Overexertion leading to relapse and worsening symptoms","description":"Participant describes a cycle of pushing herself too hard (e.g. walking excessively) which led to picking up viruses and relapse back to debilitating fatigue forcing retirement and severe activity limitations.","quotes":["\'then i started overdoing things again i was walking like ten miles every day ... i picked up a couple of viruses ... i woke up ... i just can\'t get out of bed i can\'t do this again\'","\'i actually had to retire at that stage and then being retired ... i kept pushing myself pushing myself\'"]},{"slug":"relentless-pushing-despite-limitations","name":"Relentless pushing through fatigue despite physical limits","description":"Despite exhaustion and physical inability to perform basic tasks, participant kept pushing herself to walk and exercise daily, even waking early to get dressed for walking before breakfast, leading to further energy depletion.","quotes":["\'i wouldn\'t let myself not go i\'d wake up in the morning at five o\'clock and make sure my clothes ... were in the bathroom ... i just went walking i\'d be back by seven eight nine o\'clock\'","\'then i couldn\'t really do anything for myself ... i had to lie down because i couldn\'t i didn\'t have the energy to cook or anything else\'"]},{"slug":"realization-to-accept-lifestyle-changes","name":"Realization and acceptance of necessary lifestyle changes","description":"Participant early on did not accept diagnosis fully, maintained denial to an extent, but later 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his program because it actually really made sense\'"]},{"slug":"learning-boundaries-to-manage-energy","name":"Learning to set boundaries to manage energy and avoid overcommitment","description":"Participant emphasizes importance of setting personal boundaries like letting phone calls go to voicemail to prevent energy drain and managing social demands, as well as self-monitoring to stop before reaching exhaustion.","quotes":["\'if my phone rings i let it go to voicemail so i can deal with it when i want to\'","\'learning boundaries the hardest for me was learning boundaries\'"]},{"slug":"difficulty-with-relaxation-and-rest","name":"Difficulty with relaxation and understanding true rest","description":"Participant struggles with relaxation practices like meditation and acknowledges need to retrain herself to understand and accept \'real rest\' familiar to healthy individuals but challenging for her to implement consistently.","quotes":["\'i\'m not good at relaxing ... people say do meditation and this meditation is something i just ... struggled with it\'","\'now i make myself every day lay down and take a nap or do some meditation ... i\'m like real rest\'"]},{"slug":"frustration-with-misunderstanding-by-others","name":"Frustration and occasional anger toward others’ misunderstanding of illness","description":"Participant feels annoyed and flares up when people minimize or misunderstand her illness or recovery, particularly those who never had the illness or who judge her lifestyle choices, emphasizing emotional toll of misunderstanding.","quotes":["\'when people say silly things sometimes ... i can flare up\'","\'i know what i\'ve been through ... when somebody minimizes it you can think no\'"]},{"slug":"maintaining-hope-and-positivity-despite-chronic-illness","name":"Maintaining hope and positivity despite chronic illness challenges","description":"Participant highlights her positive and obstinate personality as key factors in her refusal to accept permanent disability and her sustained belief in recovery and improvement despite long-term severe illness.","quotes":["\'i\'m just a very positive person i think i\'m also obstinate\'","\'never ever felt ... i was almost like in denial\'"]},{"slug":"self-awareness-to-avoid-overexertion","name":"Developing self-awareness to avoid overexertion and manage symptoms","description":"Participant stresses importance of listening to body signals, recognizing triggers, and adjusting activities in timely fashion to prevent relapse and maintain health improvements.","quotes":["\'i\'ve learnt to listen to myself listen to my body ... work out what my triggers are\'","\'i can stop myself before i actually get to the stage where i\'m really pushing pushing boundaries\'"]}]}', 'name': 'CodeList'}, 'id': 'call_gI2P3WMuo7IMc9a5eAcptWMK', 'type': 'function'}], 'function_call': None, 'annotations': []}, 'provider_specific_fields': {}}], 'usage': {'completion_tokens': 1169, 'prompt_tokens': 5584, 'total_tokens': 6753, 'completion_tokens_details': {'accepted_prediction_tokens': None, 'audio_tokens': 0, 'reasoning_tokens': 0, 'rejected_prediction_tokens': None}, 'prompt_tokens_details': {'audio_tokens': 0, 'cached_tokens': 0}}, 'service_tier': None, 'prompt_filter_results': [{'prompt_index': 0, 'content_filter_results': {'hate': {'filtered': False, 'severity': 'safe'}, 'jailbreak': {'filtered': False, 'detected': False}, 'self_harm': {'filtered': False, 'severity': 'safe'}, 'sexual': {'filtered': False, 'severity': 'safe'}, 'violence': {'filtered': False, 'severity': 'safe'}}}]}, 'themes': prompt='You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \'code\' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\'m here with irene o\'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\'m excited to see that once again we have so many examples that it\'s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\'ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\'t give up so you\'ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\'clock in the morning and i\'d be awake at five and just on the go but i had lots of energy so it didn\'t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\'t know what\'s wrong with me i just can\'t go any further and i stopped at my friend\'s house and she said to her i just don\'t know what\'s wrong with me i\'m i just can\'t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\'ll go and bake a cake the minute i stood up i just couldn\'t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\'ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\'s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\'t get out of bed i can\'t do this again i\'m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\'ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\'s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\'t do a long walk i would walk up the steps to the top it\'s about maybe i think it\'s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\'t let myself not go i\'d wake up in the morning at five o\'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\'d had anything to drink or eat or anything i just went walking i\'d be back by seven eight nine o\'clock sometimes have a shower and of course i got to the stage where then i couldn\'t really do anything for myself you know so once i got back i just had to lie down because i couldn\'t i didn\'t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\'t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\'clock in the morning and i got to a certain place and i thought i don\'t sit down i\'m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\'t stay here as i\'m sort of halfway up the hill well three quarters of the way up the hill if i don\'t go up i can\'t go down and i\'ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\'t know what\'s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\'t going to have it and they just sort of said well no there\'s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\'s not much we can do you\'ve got kind of learn to live with it you\'ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\'ve never been one to actually accept that that\'s going to be the rest of my life because at that stage i wasn\'t able to do anything i mean showering was something that i did if i\'d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\'m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\'t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\'t know whether i\'m just lazy or whether it\'s just that i just didn\'t have the energy to actually do all the things that one\'s supposed to do to try and get better you know i\'d read a few books as i get halfway through and then i just i just can\'t do that i try a different way of eating and then it would just be too much it\'s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\'s all on my brain it\'s\n\nSPEAKER_01: and i was not impressed i thought no i\'m going to find somebody else to watch because raylan\'s gone to the other side you know\n\nSPEAKER_01: to say it\'s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\'re saying is it\'s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\'s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\'re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\'re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\'s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\'s something i could do for quite a while i\'ve been looking for something you know that i can do that i know i\'ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\'ve never ever thought i\'m not going to get better you know i\'ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\'t think you can be healed from it i think you can go into what do you call it remission yes remission that\'s it and i don\'t think you ever get healed from it i think my mindset\'s not changed and i think you can actually be healed from it yeah and in the process i mean i\'ve learnt to listen to myself listen to my body i think that\'s so yes there\'s been a lifestyle change in a way i\'ve had to it\'s been a journey of getting to know myself work out what my triggers are and i think that\'s that\'s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\'m sure you had days where you weren\'t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\'m just a very positive person i think i\'m also obstinate\n\nSPEAKER_01: you\'re not going to tell me how i\'m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\'d go to the doctor and say well i\'m really struggling but you do know you have me don\'t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\'re like yeah i think i\'m pretty much fully here back\n\nSPEAKER_01: well it didn\'t take long it didn\'t take long at all i think like i was getting to the stage of my illness where i thought i\'m not going to give into it but i am going to have to make life changes i can\'t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\'s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\'s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\'m not good at relaxing i\'m really really not good at relaxing so i\'ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\'ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\'ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\'s been while longer that it\'s taken me to yeah to get back to knowing that i\'m fine now i\'m fine i still have my days when i\'m tired get me wrong but then i know i\'ve overdone it you know so i now can stop myself before i actually get to the stage where i\'m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\'m tired so i think i\'m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\'s going to be another at least two hours before i get home so i was able to stop myself from that no i\'m doing this because that\'s what i set up to do so you know i think it\'s things like that\n\nSPEAKER_00: yeah i think it\'s really like the brain training continues even once you\'re in that recovery phase because all of those old habits and personality traits are there it\'s pretty ingrained it\'s you think it\'s just knowing that it\'s not good for you i was naive that\'s what i thought i\'m like okay i\'ve seen the light this isn\'t the way you\'re supposed to live i\'m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\'s still something that i\'m working on\n\nSPEAKER_01: i think you do it\'s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\'s quite a common theme so there\'s things i\'ve had to put in place where you know like if my phone rings i let it go to voicemail if it\'s not you know if it\'s one of my children obviously i\'m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\'s something i\'m not i know i\'m not good at is when something comes up and people ask me to do something they don\'t expect you to do it now they\'ll say at some stage could you do this that doesn\'t work for me if you\'ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\'ve got the time and i feel like doing something so it\'s yeah it\'s it\'s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\'re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\'m like oh i\'m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\'s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\'m like real rest and i\'m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\'m not good at resting i really am not as you say i\'ll sit there for a bit and then i think let me just see what\'s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\'t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\'m not in the morning when i\'m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\'s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\'ve seen me at my worst they said to me i even look better you know they can\'t believe the difference and how much better i look obviously i\'m able to do things i\'m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\'s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\'t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\'t isolate yourself no no no you\'re doing this all wrong because you\'re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\'t have the energy to do anything else so they never understood it then they certainly don\'t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\'t understand it in the first place\n\nSPEAKER_00: yeah i think there\'s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\'t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\'t really care what people think to be honest i don\'t but then sometimes i will just flare up when somebody says something that clearly shows you don\'t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\'re not even you\'re not\n\nSPEAKER_01: you know and that\'s something i struggle with but i\'ll get\n\nSPEAKER_00: i think that\'s pretty normal i suspect virtually all of us have our limits where we\'re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\'s wrong with you\n\nSPEAKER_01: but yeah i\'m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\'s because i know i know what i\'ve been through my family know what i\'ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\'s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\'re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\'t know what i\'ve been through it was a nightmare it was but it\'s just\n\nSPEAKER_00: i don\'t think we\'re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\'t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\'s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\'s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\'s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\'m sending massive hugs to you keep at it you have totally got this don\'t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n</text>\n\n--\n\ncodes=[Code(slug=\'persistent-fatigue-and-energy-drain\', name=\'Persistent fatigue and energy drain on standing\', description=\'Participant describes extreme exhaustion and a complete drain of energy when trying to stand after lying down, leading to being bedridden for 18 months. This fatigue persisted with partial recovery but never complete, impacting daily functioning for many years.\', quotes=["\'i was there for the next eighteen months was in bed ... i felt like i had energy and i think i\'ll go and bake a cake the minute i stood up i just couldn\'t do anything i just drained of energy completely\'", "\'i was able to live a fairly good life but always tired constantly tired\'"]), Code(slug=\'overexertion-and-relapse-cycle\', name=\'Overexertion leading to relapse and worsening symptoms\', description=\'Participant describes a cycle of pushing herself too hard (e.g. walking excessively) which led to picking up viruses and relapse back to debilitating fatigue forcing retirement and severe activity limitations.\', quotes=["\'then i started overdoing things again i was walking like ten miles every day ... i picked up a couple of viruses ... i woke up ... i just can\'t get out of bed i can\'t do this again\'", "\'i actually had to retire at that stage and then being retired ... i kept pushing myself pushing myself\'"]), Code(slug=\'relentless-pushing-despite-limitations\', name=\'Relentless pushing through fatigue despite physical limits\', description=\'Despite exhaustion and physical inability to perform basic tasks, participant kept pushing herself to walk and exercise daily, even waking early to get dressed for walking before breakfast, leading to further energy depletion.\', quotes=["\'i wouldn\'t let myself not go i\'d wake up in the morning at five o\'clock and make sure my clothes ... were in the bathroom ... i just went walking i\'d be back by seven eight nine o\'clock\'", "\'then i couldn\'t really do anything for myself ... i had to lie down because i couldn\'t i didn\'t have the energy to cook or anything else\'"]), Code(slug=\'realization-to-accept-lifestyle-changes\', name=\'Realization and acceptance of necessary lifestyle changes\', description=\'Participant early on did not accept diagnosis fully, maintained denial to an extent, but later realized she needed to make significant lifestyle changes to manage her illness rather than hoping to return to previous activity levels.\', quotes=["\'i\'m not going to give into it but i am going to have to make life changes ... my life is going to have to change from that point of view\'", "\'part of it was just ignorance be part of it\'"]), Code(slug=\'brain-retraining-as-a-recovery-path\', name=\'Embracing brain retraining as a key to recovery\', description="Initial skepticism toward brain retraining shifted to acceptance after understanding it addressed body’s protective response and mental \'fight or flight\' mode, leading to participation in program and positive initial results within two weeks.", quotes=["\'my first reaction was oh no raylan no when do you start telling me it\'s all on my brain\'", "\'when he explaining ... your body has switched down some of the genes ... you\'re stuck in this fight too much ... it just started making sense\'", "\'i contacted jason and went onto his program because it actually really made sense\'"]), Code(slug=\'learning-boundaries-to-manage-energy\', name=\'Learning to set boundaries to manage energy and avoid overcommitment\', description=\'Participant emphasizes importance of setting personal boundaries like letting phone calls go to voicemail to prevent energy drain and managing social demands, as well as self-monitoring to stop before reaching exhaustion.\', quotes=["\'if my phone rings i let it go to voicemail so i can deal with it when i want to\'", "\'learning boundaries the hardest for me was learning boundaries\'"]), Code(slug=\'difficulty-with-relaxation-and-rest\', name=\'Difficulty with relaxation and understanding true rest\', description="Participant struggles with relaxation practices like meditation and acknowledges need to retrain herself to understand and accept \'real rest\' familiar to healthy individuals but challenging for her to implement consistently.", quotes=["\'i\'m not good at relaxing ... people say do meditation and this meditation is something i just ... struggled with it\'", "\'now i make myself every day lay down and take a nap or do some meditation ... i\'m like real rest\'"]), Code(slug=\'frustration-with-misunderstanding-by-others\', name=\'Frustration and occasional anger toward others’ misunderstanding of illness\', description=\'Participant feels annoyed and flares up when people minimize or misunderstand her illness or recovery, particularly those who never had the illness or who judge her lifestyle choices, emphasizing emotional toll of misunderstanding.\', quotes=["\'when people say silly things sometimes ... i can flare up\'", "\'i know what i\'ve been through ... when somebody minimizes it you can think no\'"]), Code(slug=\'maintaining-hope-and-positivity-despite-chronic-illness\', name=\'Maintaining hope and positivity despite chronic illness challenges\', description=\'Participant highlights her positive and obstinate personality as key factors in her refusal to accept permanent disability and her sustained belief in recovery and improvement despite long-term severe illness.\', quotes=["\'i\'m just a very positive person i think i\'m also obstinate\'", "\'never ever felt ... i was almost like in denial\'"]), Code(slug=\'self-awareness-to-avoid-overexertion\', name=\'Developing self-awareness to avoid overexertion and manage symptoms\', description=\'Participant stresses importance of listening to body signals, recognizing triggers, and adjusting activities in timely fashion to prevent relapse and maintain health improvements.\', quotes=["\'i\'ve learnt to listen to myself listen to my body ... work out what my triggers are\'", "\'i can stop myself before i actually get to the stage where i\'m really pushing pushing boundaries\'"])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \'theme\' is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \'share\' codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\'s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clichés, generalizations. Avoid the word \'Navigating\' in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json' output={'themes': [{'name': 'Experiencing relentless fatigue and energy crashes with post-exertion collapse', 'description': 'Participants describe extreme exhaustion where standing up or doing basic activities leads to complete energy drain, necessitating long periods of bed rest and causing severe impact on daily functioning, including being bedridden for months. This persistent fatigue cycles with relapses particularly after overexertion, underscoring the debilitating nature of their conditions.', 'code_slugs': ['persistent-fatigue-and-energy-drain', 'overexertion-and-relapse-cycle', 'relentless-pushing-despite-limitations']}, {'name': 'Struggling to accept illness limits while refusing to give up hope', 'description': 'Participants reveal a tension between denial and acceptance of chronic illness limitations. They maintain a positive and obstinate mindset, resisting the notion of permanent disability. Despite setbacks and long-term fatigue, they sustain hope, learning lifestyle changes and gradual self-awareness to manage symptoms while holding onto the belief of eventual remission rather than cure.', 'code_slugs': ['realization-to-accept-lifestyle-changes', 'maintaining-hope-and-positivity-despite-chronic-illness', 'self-awareness-to-avoid-overexertion']}, {'name': 'Embracing brain retraining programs to regain control and recovery', 'description': "Participants initially skeptical of brain-based recovery methods, come to accept and engage with brain retraining that addresses protective 'fight or flight' responses encoded in the body’s genes. They find validation and structured approaches that enable confidence and early positive signs, with brain retraining experienced as a crucial part of their recovery journey and self-healing process.", 'code_slugs': ['brain-retraining-as-a-recovery-path']}, {'name': 'Learning boundaries and managing social demands to conserve energy', 'description': 'Participants emphasize the importance of setting clear boundaries to avoid energy depletion, such as letting non-essential calls go to voicemail and managing people-pleasing tendencies. They highlight struggle and growth in learning to say no and delay tasks, balancing social demands with personal health needs to prevent relapse and better manage chronic fatigue symptoms.', 'code_slugs': ['learning-boundaries-to-manage-energy']}, {'name': 'Difficulty with genuine rest and retraining habits for meaningful relaxation', 'description': "Participants report difficulty with standard relaxation and meditation practices, struggling to let go and genuinely rest. They describe the challenge of retraining their minds to value and consistently implement 'real rest' like naps or meditation, essential for recovery but alien to ingrained habits and mental states shaped by chronic fatigue.", 'code_slugs': ['difficulty-with-relaxation-and-rest']}, {'name': 'Frustration and emotional challenges from others misunderstanding illness and recovery', 'description': 'Participants express ongoing emotional struggle when others minimize or fail to understand their illness experience and recovery process. They describe feelings of frustration, flaring up, and limited patience with ignorance or misjudgment, especially from those who never had the illness or who challenge their lifestyle adaptations, revealing a significant social and psychological burden.', 'code_slugs': ['frustration-with-misunderstanding-by-others']}]} completion={'id': 'chatcmpl-COIsxZbPf4EfDtt7EmT0yl7VFYKTl', 'created': 1759908503, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"themes":[{"name":"Experiencing relentless fatigue and energy crashes with post-exertion collapse","description":"Participants describe extreme exhaustion where standing up or doing basic activities leads to complete energy drain, necessitating long periods of bed rest and causing severe impact on daily functioning, including being bedridden for months. This persistent fatigue cycles with relapses particularly after overexertion, underscoring the debilitating nature of their conditions.","code_slugs":["persistent-fatigue-and-energy-drain","overexertion-and-relapse-cycle","relentless-pushing-despite-limitations"]},{"name":"Struggling to accept illness limits while refusing to give up hope","description":"Participants reveal a tension between denial and acceptance of chronic illness limitations. They maintain a positive and obstinate mindset, resisting the notion of permanent disability. 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| item_1 | item_1 | 1 | You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n</text>\nAlways use the tools/JSON response.\n\n```json | {'themes': [{'name': 'Seeking comprehensive healing beyond individual MECFS symptom treatments', 'description': 'Participants expressed the importance of a holistic recovery approach, supporting the body as a whole rather than targeting specific symptoms. They found that symptom management provided only palliative relief and was insufficient for healing. Focusing too much on isolated symptoms was overwhelming and not helpful, while a broad, integrated strategy led to gradual overall improvement and resolution of symptoms.', 'code_slugs': ['holistic-recovery-focus-mecfs', 'symptom-management-as-palliation-not-cure']}, {'name': 'Feeling frustrated and disillusioned by symptom-specific research and treatments', 'description': 'Participants shared feelings of desperation and disappointment from extensively researching specific symptoms and fixes, including costly, risky, and ineffective treatments. They experienced emotional exhaustion after repeated failures to find symptom-specific cures. This led to recognition that a more comprehensive healing strategy was necessary beyond attempting to stop symptoms one-by-one.', 'code_slugs': ['frustration-with-symptom-focused-help-seeking', 'holistic-recovery-focus-mecfs']}, {'name': 'Wanting hopeful reassurance through symptom and recovery comparisons but finding it unproductive', 'description': 'Participants desired to compare their symptoms and recovery stories with others to find hope and reassurance. However, the wide variability of MECFS symptoms made such comparisons misleading and discouraging. They emphasized the importance of recognizing individual differences and cautioned against overreliance on symptom matching or blood test comparisons to predict recovery chances or treatment success.', 'code_slugs': ['symptom-comparison-limitations']}, {'name': 'Needing personalized recovery plans tailored to individual symptoms, lifestyle, and journeys', 'description': 'Participants highlighted that recovery from MECFS must be deeply personal, with plans tailored to individuals’ unique symptoms, severity, life circumstances, and experiences. They stressed that pacing and treatments should be customized rather than adopting a one-size-fits-all approach. Building recovery plans based on one’s own body and intuition fosters empowerment and supports more effective healing paths.', 'code_slugs': ['need-for-personalized-recovery-plans']}, {'name': 'Setting emotional boundaries to protect well-being when discussing difficult symptoms', 'description': 'Participants recognized the emotional toll of revisiting and discussing past symptoms through one-on-one conversations and social media interactions. They emphasized establishing boundaries to avoid overwhelming situations, protect mental health, and preserve personal space. Despite the desire to share recovery stories and receive positive feedback, they found discussions about symptoms often retraumatizing, requiring limits on symptom-focused exchanges.', 'code_slugs': ['emotional-boundaries-around-symptom-discussion']}]} | {'themes': [{'name': 'Seeking comprehensive healing beyond individual MECFS symptom treatments', 'description': 'Participants expressed the importance of a holistic recovery approach, supporting the body as a whole rather than targeting specific symptoms. They found that symptom management provided only palliative relief and was insufficient for healing. Focusing too much on isolated symptoms was overwhelming and not helpful, while a broad, integrated strategy led to gradual overall improvement and resolution of symptoms.', 'code_slugs': ['holistic-recovery-focus-mecfs', 'symptom-management-as-palliation-not-cure']}, {'name': 'Feeling frustrated and disillusioned by symptom-specific research and treatments', 'description': 'Participants shared feelings of desperation and disappointment from extensively researching specific symptoms and fixes, including costly, risky, and ineffective treatments. They experienced emotional exhaustion after repeated failures to find symptom-specific cures. This led to recognition that a more comprehensive healing strategy was necessary beyond attempting to stop symptoms one-by-one.', 'code_slugs': ['frustration-with-symptom-focused-help-seeking', 'holistic-recovery-focus-mecfs']}, {'name': 'Wanting hopeful reassurance through symptom and recovery comparisons but finding it unproductive', 'description': 'Participants desired to compare their symptoms and recovery stories with others to find hope and reassurance. However, the wide variability of MECFS symptoms made such comparisons misleading and discouraging. They emphasized the importance of recognizing individual differences and cautioned against overreliance on symptom matching or blood test comparisons to predict recovery chances or treatment success.', 'code_slugs': ['symptom-comparison-limitations']}, {'name': 'Needing personalized recovery plans tailored to individual symptoms, lifestyle, and journeys', 'description': 'Participants highlighted that recovery from MECFS must be deeply personal, with plans tailored to individuals’ unique symptoms, severity, life circumstances, and experiences. They stressed that pacing and treatments should be customized rather than adopting a one-size-fits-all approach. Building recovery plans based on one’s own body and intuition fosters empowerment and supports more effective healing paths.', 'code_slugs': ['need-for-personalized-recovery-plans']}, {'name': 'Setting emotional boundaries to protect well-being when discussing difficult symptoms', 'description': 'Participants recognized the emotional toll of revisiting and discussing past symptoms through one-on-one conversations and social media interactions. They emphasized establishing boundaries to avoid overwhelming situations, protect mental health, and preserve personal space. Despite the desire to share recovery stories and receive positive feedback, they found discussions about symptoms often retraumatizing, requiring limits on symptom-focused exchanges.', 'code_slugs': ['emotional-boundaries-around-symptom-discussion']}]} | [(type, chatter), (results, {'codes': prompt="You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n</text>\nAlways use the tools/JSON response.\n\n```json" output={'codes': [{'slug': 'holistic-recovery-focus-mecfs', 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Painkillers, sedatives, and other symptom treatments helped manage the suffering temporarily but did not address the underlying illness, which required a broader healing strategy.', 'quotes': ['...symptom management that i did was more palliative and not so much about recovery...', '...if i had pain i might take painkillers or if i was having really bad problems with sleeping... i might go see my doctor and get some prescription sedatives...', '...targeting the specific symptoms was never healing them in my experience...']}, {'slug': 'need-for-personalized-recovery-plans', 'name': "Need to tailor recovery plans individually to each person's lifestyle and journey", 'description': "Participants highlighted the importance of creating personalized recovery plans tailored to each individual's unique symptoms, lifestyle, and disease experience. Recovery methods that worked for one person might not work for another, and pacing and treatments should be adapted accordingly.", 'quotes': ["...somebody's recovery plan and them selecting the things they want to try needs to be tailored as well...", '...pacing has to be tailored individually for a particular person because their life is so different...', '...look at your own life like a scientist without freaking out about everything...']}, {'slug': 'frustration-with-symptom-focused-help-seeking', 'name': 'Frustration and disappointment from focusing on symptom-specific fixes', 'description': 'Participants shared feelings of desperation, frustration, and disillusionment from seeking specific symptom fixes through extensive research, treatments, and comparisons. Many attempts, including costly and risky interventions, failed to provide holistic healing, leading to emotional exhaustion and the need to find alternative strategies.', 'quotes': ['...i spent thousands of hours googling my symptoms...', '...this led me to spend thousands of dollars... i almost poisoning myself by buying organic elderberries...', "...i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one..."]}, {'slug': 'emotional-boundaries-around-symptom-discussion', 'name': 'Setting emotional boundaries around discussing past symptoms', 'description': 'Participants expressed the need to set boundaries around conversations about symptoms, including avoiding one-on-one symptom troubleshooting. 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This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \'code\' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\'re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\'re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\'ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\'t have that many because we\'re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\'m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\'s going on if it\'s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\'ve definitely found that once we have assessed that these symptoms aren\'t a sign of something else that it\'s just part of mecfs that putting too much concentration on them isn\'t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\'m here to tell you why symptom comparison and stop the symptom thinking isn\'t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\'ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\'s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\'re supposed to sip them in a tea this led me to many doctor\'s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\'s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\'t really help me much i\'d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\'t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\'ve recovered and i\'m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\'s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\'re the same if my symptoms match your symptoms and i recovered then that means that there\'s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\'t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\'s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\'ve recovered trying to compare symptoms is because they want them to tell them what to do and that\'s not honestly how i healed i had to look in the mirror and say liz i\'m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\'t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\'s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\'s not the same thing and the second way that it\'s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\'t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\'ve got one really annoying or frustrating or difficult symptom that you\'re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\'re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\'s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\'s tons of i don\'t mention but it\'s because listing every single symptom isn\'t going to help you get out at the end of the day the symptoms aren\'t the issue the symptoms are just your body\'s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\'t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\'t help you personally just use that to inspire you to perhaps give you some ideas but don\'t get too carried away don\'t compare\n\nSPEAKER_01: your symptoms with somebody else\'s your test results with somebody else\'s test results stay true to what\'s going to work for you certainly when it comes to test results knowing what somebody\'s blood reports were doesn\'t really impact or have any correlation to what yours were because it depends what your starting point was what\'s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\'t sign up for was to troubleshoot people\'s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\'m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\'s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\'re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\'m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\'m not a huge fan of labels because to be honest it doesn\'t change doesn\'t change anything what it\'s called doesn\'t suddenly change how you\'re feeling or how long you\'ve had it or how long it\'s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\'s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\'t make a difference and comparing your symptoms to somebody else\'s and are yours worse or better than theirs again that\'s something that i really encourage people not to get too caught up in i\'m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\'s severe for you it doesn\'t matter how it compares to somebody else\'s life it\'s all about your journey through and i guess that\'s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\'ve got this so my key message to everybody watching this is look at your own personal journey through this don\'t compare your results to somebody else\'s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\'s experience of living with mecfs is different not only because how long you\'ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\'s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\'ve heard our thoughts it\'s just three of us we\'d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\'s keep the conversation going in the comments because we\'d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\'m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\'re doing well thank you for watching and i\'ll see you again soon\n</text>\n\n--\n\ncodes=[Code(slug=\'holistic-recovery-focus-mecfs\', name=\'Focusing on holistic recovery instead of individual symptoms\', description=\'Participants described the importance of focusing on overall body support and holistic healing in managing MECFS rather than trying to treat each symptom individually. Trying to treat isolated symptoms was seen as overwhelming and ineffective, while a comprehensive approach contributed to gradual recovery.\', quotes=[\'...my recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole...\', \'...targeting the specific symptoms was never healing them in my experience...\', \'...i pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone...\']), Code(slug=\'symptom-comparison-limitations\', name=\'Desire for symptom comparison but finding it unhelpful\', description=\'Participants expressed wanting to compare their symptoms with others to find reassurance or hopeful signs of recovery, but found this approach often unhelpful or even misleading. They noted that MECFS symptoms vary widely across individuals, making direct symptom comparisons unproductive and potentially discouraging.\', quotes=["...people want to compare their symptoms against mine... to see if we\'re the same if my symptoms match your symptoms and i recovered then that means that there\'s good hope...", "...if someone is sizing up their illness against my illness and it doesn\'t match exactly... that means that they do not have a chance of recovering...", "...don\'t get too caught up on comparing symptoms... scanning information for what were their test results... it probably won\'t help you personally..."]), Code(slug=\'symptom-management-as-palliation-not-cure\', name=\'Using symptom management mainly for comfort rather than recovery\', description=\'Participants described symptom management during MECFS as largely palliative—to ease discomfort—not a path to cure. Painkillers, sedatives, and other symptom treatments helped manage the suffering temporarily but did not address the underlying illness, which required a broader healing strategy.\', quotes=[\'...symptom management that i did was more palliative and not so much about recovery...\', \'...if i had pain i might take painkillers or if i was having really bad problems with sleeping... i might go see my doctor and get some prescription sedatives...\', \'...targeting the specific symptoms was never healing them in my experience...\']), Code(slug=\'need-for-personalized-recovery-plans\', name="Need to tailor recovery plans individually to each person\'s lifestyle and journey", description="Participants highlighted the importance of creating personalized recovery plans tailored to each individual\'s unique symptoms, lifestyle, and disease experience. Recovery methods that worked for one person might not work for another, and pacing and treatments should be adapted accordingly.", quotes=["...somebody\'s recovery plan and them selecting the things they want to try needs to be tailored as well...", \'...pacing has to be tailored individually for a particular person because their life is so different...\', \'...look at your own life like a scientist without freaking out about everything...\']), Code(slug=\'frustration-with-symptom-focused-help-seeking\', name=\'Frustration and disappointment from focusing on symptom-specific fixes\', description=\'Participants shared feelings of desperation, frustration, and disillusionment from seeking specific symptom fixes through extensive research, treatments, and comparisons. Many attempts, including costly and risky interventions, failed to provide holistic healing, leading to emotional exhaustion and the need to find alternative strategies.\', quotes=[\'...i spent thousands of hours googling my symptoms...\', \'...this led me to spend thousands of dollars... i almost poisoning myself by buying organic elderberries...\', "...i needed a more comprehensive strategy to actually heal that didn\'t involve just trying to stop all my symptoms one by one..."]), Code(slug=\'emotional-boundaries-around-symptom-discussion\', name=\'Setting emotional boundaries around discussing past symptoms\', description=\'Participants expressed the need to set boundaries around conversations about symptoms, including avoiding one-on-one symptom troubleshooting. Sharing their recovery stories was positive but revisiting symptoms was traumatic and could be overwhelming, necessitating limits to preserve well-being.\', quotes=[\'...i now have boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either...\', "...writing my own story on my blog honestly took me forever because it\'s pretty traumatizing going back there...", \'...consider that people who share their stories are still human and it might still be fresh their challenges on their journey...\'])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \'theme\' is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \'share\' codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\'s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clichés, generalizations. Avoid the word \'Navigating\' in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json' output={'themes': [{'name': 'Seeking comprehensive healing beyond individual MECFS symptom treatments', 'description': 'Participants expressed the importance of a holistic recovery approach, supporting the body as a whole rather than targeting specific symptoms. They found that symptom management provided only palliative relief and was insufficient for healing. Focusing too much on isolated symptoms was overwhelming and not helpful, while a broad, integrated strategy led to gradual overall improvement and resolution of symptoms.', 'code_slugs': ['holistic-recovery-focus-mecfs', 'symptom-management-as-palliation-not-cure']}, {'name': 'Feeling frustrated and disillusioned by symptom-specific research and treatments', 'description': 'Participants shared feelings of desperation and disappointment from extensively researching specific symptoms and fixes, including costly, risky, and ineffective treatments. They experienced emotional exhaustion after repeated failures to find symptom-specific cures. This led to recognition that a more comprehensive healing strategy was necessary beyond attempting to stop symptoms one-by-one.', 'code_slugs': ['frustration-with-symptom-focused-help-seeking', 'holistic-recovery-focus-mecfs']}, {'name': 'Wanting hopeful reassurance through symptom and recovery comparisons but finding it unproductive', 'description': 'Participants desired to compare their symptoms and recovery stories with others to find hope and reassurance. However, the wide variability of MECFS symptoms made such comparisons misleading and discouraging. They emphasized the importance of recognizing individual differences and cautioned against overreliance on symptom matching or blood test comparisons to predict recovery chances or treatment success.', 'code_slugs': ['symptom-comparison-limitations']}, {'name': 'Needing personalized recovery plans tailored to individual symptoms, lifestyle, and journeys', 'description': 'Participants highlighted that recovery from MECFS must be deeply personal, with plans tailored to individuals’ unique symptoms, severity, life circumstances, and experiences. They stressed that pacing and treatments should be customized rather than adopting a one-size-fits-all approach. Building recovery plans based on one’s own body and intuition fosters empowerment and supports more effective healing paths.', 'code_slugs': ['need-for-personalized-recovery-plans']}, {'name': 'Setting emotional boundaries to protect well-being when discussing difficult symptoms', 'description': 'Participants recognized the emotional toll of revisiting and discussing past symptoms through one-on-one conversations and social media interactions. They emphasized establishing boundaries to avoid overwhelming situations, protect mental health, and preserve personal space. Despite the desire to share recovery stories and receive positive feedback, they found discussions about symptoms often retraumatizing, requiring limits on symptom-focused exchanges.', 'code_slugs': ['emotional-boundaries-around-symptom-discussion']}]} completion={'id': 'chatcmpl-COIsxlqycAQEzq30MZLmdT5pPtPhS', 'created': 1759908503, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"themes":[{"name":"Seeking comprehensive healing beyond individual MECFS symptom treatments","description":"Participants expressed the importance of a holistic recovery approach, supporting the body as a whole rather than targeting specific symptoms. They found that symptom management provided only palliative relief and was insufficient for healing. Focusing too much on isolated symptoms was overwhelming and not helpful, while a broad, integrated strategy led to gradual overall improvement and resolution of symptoms.","code_slugs":["holistic-recovery-focus-mecfs","symptom-management-as-palliation-not-cure"]},{"name":"Feeling frustrated and disillusioned by symptom-specific research and treatments","description":"Participants shared feelings of desperation and disappointment from extensively researching specific symptoms and fixes, including costly, risky, and ineffective treatments. They experienced emotional exhaustion after repeated failures to find symptom-specific cures. This led to recognition that a more comprehensive healing strategy was necessary beyond attempting to stop symptoms one-by-one.","code_slugs":["frustration-with-symptom-focused-help-seeking","holistic-recovery-focus-mecfs"]},{"name":"Wanting hopeful reassurance through symptom and recovery comparisons but finding it unproductive","description":"Participants desired to compare their symptoms and recovery stories with others to find hope and reassurance. However, the wide variability of MECFS symptoms made such comparisons misleading and discouraging. They emphasized the importance of recognizing individual differences and cautioned against overreliance on symptom matching or blood test comparisons to predict recovery chances or treatment success.","code_slugs":["symptom-comparison-limitations"]},{"name":"Needing personalized recovery plans tailored to individual symptoms, lifestyle, and journeys","description":"Participants highlighted that recovery from MECFS must be deeply personal, with plans tailored to individuals’ unique symptoms, severity, life circumstances, and experiences. They stressed that pacing and treatments should be customized rather than adopting a one-size-fits-all approach. Building recovery plans based on one’s own body and intuition fosters empowerment and supports more effective healing paths.","code_slugs":["need-for-personalized-recovery-plans"]},{"name":"Setting emotional boundaries to protect well-being when discussing difficult symptoms","description":"Participants recognized the emotional toll of revisiting and discussing past symptoms through one-on-one conversations and social media interactions. They emphasized establishing boundaries to avoid overwhelming situations, protect mental health, and preserve personal space. Despite the desire to share recovery stories and receive positive feedback, they found discussions about symptoms often retraumatizing, requiring limits on symptom-focused exchanges.","code_slugs":["emotional-boundaries-around-symptom-discussion"]}]}', 'name': 'Themes'}, 'id': 'call_6hEXC8SqxBf2RPnwVkulnNuS', 'type': 'function'}], 'function_call': None, 'annotations': []}, 'provider_specific_fields': {}}], 'usage': {'completion_tokens': 513, 'prompt_tokens': 4590, 'total_tokens': 5103, 'completion_tokens_details': {'accepted_prediction_tokens': None, 'audio_tokens': 0, 'reasoning_tokens': 0, 'rejected_prediction_tokens': None}, 'prompt_tokens_details': {'audio_tokens': 0, 'cached_tokens': 0}}, 'service_tier': None, 'prompt_filter_results': [{'prompt_index': 0, 'content_filter_results': {'hate': {'filtered': False, 'severity': 'safe'}, 'jailbreak': {'filtered': False, 'detected': False}, 'self_harm': {'filtered': False, 'severity': 'safe'}, 'sexual': {'filtered': False, 'severity': 'safe'}, 'violence': {'filtered': False, 'severity': 'safe'}}}]}})] |
| item_2 | item_2 | 2 | You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n</text>\nAlways use the tools/JSON response.\n\n```json | {'themes': [{'name': 'Deep gratitude and awe for renewed life after chronic illness recovery', 'description': 'This theme captures the participant\'s overwhelming sense of gratitude and amazement about living a life once only dreamed of due to chronic illness recovery. They describe moments of feeling like a "walking miracle," appreciating life with childlike wonder, and maintaining joy despite setbacks. This theme highlights how the participant values each day as a precious victory and reflects a profound shift in perspective and appreciation for life.', 'code_slugs': ['walking-miracle-gratitude-for-life-38']}, {'name': 'Struggle with detachment from healthy friends who take wellness for granted', 'description': 'Participants feel a sense of detachment and difficulty relating to friends who have never experienced chronic illness, especially when those friends complain about life or neglect physical health. The participant misses activities like working out and struggles to understand those who are able but unwilling to engage in wellness. This theme reflects the emotional distance and isolation felt in social relationships post-illness recovery.', 'code_slugs': ['difficulty-relating-to-healthy-friends-81']}, {'name': 'Frustration over medical misdiagnosis and delayed recognition of chronic fatigue symptoms', 'description': 'The participant recounts the prolonged and frustrating journey through misdiagnosis and dismissal by medical professionals, initially diagnosed with fibromyalgia while fatigue symptoms were overlooked. This theme underscores the experience of receiving little help or understanding over many years, contributing to a sense of neglect and uncertainty in the healthcare process.', 'code_slugs': ['diagnosis-delay-and-misdiagnosis-60']}, {'name': 'Active self-advocacy and persistence in seeking knowledgeable healthcare providers', 'description': "This theme reflects the participant's proactive efforts to manage their health through self-rehabilitation, researching physicians, relocating for better care, and collaborating with investigative providers. The participant describes working with specialists who carefully examined underlying infections and genetic factors, showing determination and resourcefulness in overcoming healthcare system challenges.", 'code_slugs': ['self-advocacy-for-healthcare-72', 'genetic-condition-discovery-and-treatment-75']}, {'name': 'Major lifestyle changes including diet, movement, and toxin avoidance for healing', 'description': 'Participants undertake drastic modifications such as elimination diets targeting dairy, gluten, sugar, and nightshades, coupled with gentle movement therapies and removal of environmental toxins. This theme captures the careful, individualized approach to healing through body-focused changes and gradual physical rehabilitation, emphasizing patience and persistence in recovery.', 'code_slugs': ['drastic-lifestyle-changes-for-recovery-81', 'overcoming-sugar-addiction-for-healing-56', 'movement-therapy-as-gentle-rehab-63']}, {'name': 'Personal transformation and spiritual growth through chronic illness experience', 'description': 'This theme highlights the profound psychological and spiritual shifts participants undergo, including humility, acceptance of help, redefined self-worth beyond career achievements, and a deepened faith. The illness is seen as a catalyst for personal growth, reshaping identity and spirituality, fostering gratitude, and instilling new values about life and relationships.', 'code_slugs': ['psychological-impact-and-growth-from-illness-80', 'self-empowerment-through-knowledge-and-faith-64']}, {'name': 'Anxiety and self-compassion in distinguishing pregnancy symptoms from relapse fears', 'description': 'Participants describe the anxiety of interpreting pregnancy-related symptoms such as fatigue and headaches within the context of past chronic illness. They emphasize the need to differentiate normal pregnancy experiences from illness relapse, practicing self-compassion and cautious optimism, while acknowledging the triggering nature of these symptoms.', 'code_slugs': ['fear-and-anxiety-during-pregnancy-after-illness-64']}, {'name': 'Hope inspired by recovery stories and community connection in chronic illness', 'description': "This theme reflects the vital role of witnessing others' recovery journeys in maintaining hope and motivation. Participants stress the loneliness and despair without such examples, and the importance of shared experiences and community support for sustaining perseverance through the difficult, long recovery process of chronic illness.", 'code_slugs': ['hope-and-positivity-in-chronic-illness-recovery-57']}]} | {'themes': [{'name': 'Deep gratitude and awe for renewed life after chronic illness recovery', 'description': 'This theme captures the participant's overwhelming sense of gratitude and amazement about living a life once only dreamed of due to chronic illness recovery. They describe moments of feeling like a "walking miracle," appreciating life with childlike wonder, and maintaining joy despite setbacks. This theme highlights how the participant values each day as a precious victory and reflects a profound shift in perspective and appreciation for life.', 'code_slugs': ['walking-miracle-gratitude-for-life-38']}, {'name': 'Struggle with detachment from healthy friends who take wellness for granted', 'description': 'Participants feel a sense of detachment and difficulty relating to friends who have never experienced chronic illness, especially when those friends complain about life or neglect physical health. The participant misses activities like working out and struggles to understand those who are able but unwilling to engage in wellness. This theme reflects the emotional distance and isolation felt in social relationships post-illness recovery.', 'code_slugs': ['difficulty-relating-to-healthy-friends-81']}, {'name': 'Frustration over medical misdiagnosis and delayed recognition of chronic fatigue symptoms', 'description': 'The participant recounts the prolonged and frustrating journey through misdiagnosis and dismissal by medical professionals, initially diagnosed with fibromyalgia while fatigue symptoms were overlooked. This theme underscores the experience of receiving little help or understanding over many years, contributing to a sense of neglect and uncertainty in the healthcare process.', 'code_slugs': ['diagnosis-delay-and-misdiagnosis-60']}, {'name': 'Active self-advocacy and persistence in seeking knowledgeable healthcare providers', 'description': 'This theme reflects the participant's proactive efforts to manage their health through self-rehabilitation, researching physicians, relocating for better care, and collaborating with investigative providers. The participant describes working with specialists who carefully examined underlying infections and genetic factors, showing determination and resourcefulness in overcoming healthcare system challenges.', 'code_slugs': ['self-advocacy-for-healthcare-72', 'genetic-condition-discovery-and-treatment-75']}, {'name': 'Major lifestyle changes including diet, movement, and toxin avoidance for healing', 'description': 'Participants undertake drastic modifications such as elimination diets targeting dairy, gluten, sugar, and nightshades, coupled with gentle movement therapies and removal of environmental toxins. This theme captures the careful, individualized approach to healing through body-focused changes and gradual physical rehabilitation, emphasizing patience and persistence in recovery.', 'code_slugs': ['drastic-lifestyle-changes-for-recovery-81', 'overcoming-sugar-addiction-for-healing-56', 'movement-therapy-as-gentle-rehab-63']}, {'name': 'Personal transformation and spiritual growth through chronic illness experience', 'description': 'This theme highlights the profound psychological and spiritual shifts participants undergo, including humility, acceptance of help, redefined self-worth beyond career achievements, and a deepened faith. The illness is seen as a catalyst for personal growth, reshaping identity and spirituality, fostering gratitude, and instilling new values about life and relationships.', 'code_slugs': ['psychological-impact-and-growth-from-illness-80', 'self-empowerment-through-knowledge-and-faith-64']}, {'name': 'Anxiety and self-compassion in distinguishing pregnancy symptoms from relapse fears', 'description': 'Participants describe the anxiety of interpreting pregnancy-related symptoms such as fatigue and headaches within the context of past chronic illness. They emphasize the need to differentiate normal pregnancy experiences from illness relapse, practicing self-compassion and cautious optimism, while acknowledging the triggering nature of these symptoms.', 'code_slugs': ['fear-and-anxiety-during-pregnancy-after-illness-64']}, {'name': 'Hope inspired by recovery stories and community connection in chronic illness', 'description': 'This theme reflects the vital role of witnessing others' recovery journeys in maintaining hope and motivation. Participants stress the loneliness and despair without such examples, and the importance of shared experiences and community support for sustaining perseverance through the difficult, long recovery process of chronic illness.', 'code_slugs': ['hope-and-positivity-in-chronic-illness-recovery-57']}]} | [(type, chatter), (results, {'codes': prompt="You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n</text>\nAlways use the tools/JSON response.\n\n```json" output={'codes': [{'slug': 'walking-miracle-gratitude-for-life-38', 'name': 'Walking miracle gratitude for life after chronic illness', 'description': 'This code captures the deep appreciation and awe the participant feels about living a life they once only dreamed of due to recovering from chronic illness. They describe moments of enjoying life with childlike wonder and being grateful each day despite small setbacks.', 'quotes': ["I'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible", "this joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes", "It's like being like when you watch a six year old wandering through the world ... these new eyes where you just get to almost be childlike again"]}, {'slug': 'difficulty-relating-to-healthy-friends-81', 'name': 'Difficulty relating to healthy friends post illness', 'description': 'The participant experiences detachment and struggle maintaining friendships with physically healthy friends who complain about their lives. They find it hard to relate to people who seem to take their health for granted and have difficulty understanding those who choose not to engage in activities like working out, which the participant once loved but had to give up.', 'quotes': ["It is hard though to have friends who've never been through it ... and they complain about their lives and i just feel such a detachment sometimes", "Sometimes it's hard for me to be their friend now because I'm like you have it all", 'I really struggle with people who seem physically able to go to the gym but just choose not to', "I would give anything to (work out) because i love working out so that's one of my things that i really miss"]}, {'slug': 'diagnosis-delay-and-misdiagnosis-60', 'name': 'Frustration with delayed diagnosis and misdiagnosis', 'description': "The participant recounts the challenges in receiving an accurate diagnosis. Initially diagnosed with fibromyalgia, their fatigue symptoms were overlooked which delayed appropriate treatment. They express frustration with the medical system's lack of understanding and care for their chronic fatigue symptoms over many years.", 'quotes': ['I was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued', "no one would even really treat it i don't think they really what to do", 'It took a while before i even got the chronic fatigue diagnosis but no one would even really treat it for many years']}, {'slug': 'self-advocacy-for-healthcare-72', 'name': 'Self advocacy and research to access better healthcare', 'description': 'The participant took an active role in managing their health by rehabilitating themselves, researching doctors, and eventually moving to access better medical care. They found a nurse practitioner who performed comprehensive blood work and helped identify underlying infections. This proactive approach was crucial for their eventual diagnosis and treatment plan.', 'quotes': ['I kept rehabilitate myself ... researching doctors researching as much as i could', "Eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors", 'She was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that']}, {'slug': 'genetic-condition-discovery-and-treatment-75', 'name': 'Discovery and treatment of genetic mitochondrial disease', 'description': 'The participant was diagnosed with a rare mitochondrial disease through full genome testing. This diagnosis explained their inability to fight infections and fatigue. Treatment included a mitochondrial cocktail which helped their body produce mitochondria and regain strength to combat infections, marking a turning point in their recovery.', 'quotes': ['I did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven', "He put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections", 'By him supplementing and boosting my mitochondria i could now fight the infections']}, {'slug': 'drastic-lifestyle-changes-for-recovery-81', 'name': 'Drastic lifestyle changes including diet and environment for recovery', 'description': 'The participant emphasizes the importance of significant lifestyle modifications for healing including an elimination diet, gradual movement rehabilitation, and removing environmental toxins. Specific dietary changes involved cutting out dairy, gluten, sugar, and nightshades, which were once inflammatory but sometimes reintroduced gradually.', 'quotes': ['I had to dramatically change my diet ... use food as medicine as a mindset', 'I removed all toxic ingredients immunotoxic i water filtration system on my house', 'Dairy gluten and sugar were main offenders and nightshades bothered me for a while']}, {'slug': 'overcoming-sugar-addiction-for-healing-56', 'name': 'Overcoming intense sugar addiction to support healing', 'description': 'The participant describes an intense physical addiction to sugar that disrupted their health and sleep patterns. Through gut healing and probiotics, cravings diminished, allowing them to develop a healthier relationship with food and regain control over their eating habits, marking an important step in recovery.', 'quotes': ['Sugar was a massive one for me and sugar was a tough one for me ... i clearly had a physical addiction', 'I would get up in the middle of the night every single night and eat sugar', 'Once my body started healing the cravings went away']}, {'slug': 'movement-therapy-as-gentle-rehab-63', 'name': 'Movement therapy as gentle rehabilitation rather than exercise', 'description': 'The participant highlights the importance of very gradual and gentle movement therapy rather than typical exercise. They emphasize the challenges of balancing activity and rest in chronic fatigue syndrome, noting that even a few minutes of movement can be critical for oxygenation and lymphatic flow while avoiding pushing to the point of relapse.', 'quotes': ['I had to gradually increase my ability to move', 'My exercise program was so small you know it was one to two minutes a day and in the beginning not even every single day', 'I couldn’t rest my way out of this i couldn’t just lay in bed or lay on the couch all day']}, {'slug': 'psychological-impact-and-growth-from-illness-80', 'name': 'Psychological impact and personal growth from chronic illness experience', 'description': 'The participant reflects on how chronic illness fundamentally changed their identity, values, and spirituality. They describe feelings of humility, acceptance, and deeper self-worth beyond professional achievements. The illness brought perspective, spiritual growth, gratitude, and a renewed appreciation for life and relationships.', 'quotes': ['It humbled me changed me i maybe was prideful before i wouldn’t say i had a spirituality before', 'I had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that', 'this illness catapults our growth and puts us in a better direction']}, {'slug': 'fear-and-anxiety-during-pregnancy-after-illness-64', 'name': 'Fear and anxiety about pregnancy symptoms being illness relapse', 'description': 'The participant shares the anxiety and uncertainty during pregnancy about whether normal pregnancy symptoms like fatigue and headaches signal illness relapse. They learn to differentiate normal pregnancy experiences from chronic illness symptoms, practicing self-compassion and cautious optimism about their health journey.', 'quotes': ["I keep reminding myself these are normal symptoms it's triggering sometimes to be like is this normal fatigue or is this going back", 'I keep reminding myself no it’s normal to have headaches when you’re pregnant it’s normal to feel tired', 'It has been quite a journey i keep reminding myself sometimes']}, {'slug': 'hope-and-positivity-in-chronic-illness-recovery-57', 'name': 'Hope and positivity through seeing others recover from chronic illness', 'description': 'The participant expresses how seeing recovery stories from others provides essential hope and motivation for their own healing journey. They highlight the loneliness and despair without such examples and stress the importance of community and shared experiences in sustaining perseverance through chronic illness.', 'quotes': ["It's so nice to see so many people that are getting past these things", 'I remember when i first got sick i was trying to find recovery stories and i just couldn’t find any', "People start reaching out to me it's crazy like hey so nice to meet you you recovered as well"]}, {'slug': 'self-empowerment-through-knowledge-and-faith-64', 'name': 'Self empowerment through knowledge acquisition and faith in recovery', 'description': "The participant credits their recovery journey to extensive self-education about their condition combined with their faith and spiritual trust. They emphasize the importance of trusting the healing process and rejecting limiting prognoses, comparing learning about illness to earning a 'bachelor’s degree' in chronic illness.", 'quotes': ['I would just tell myself to trust that process', 'I had to go through all those years of research and learning', 'It was like getting a bachelor’s degree in chronic illness', 'You cannot limit a limitless guy']}]} completion={'id': 'chatcmpl-COIs4WixmswlENFMnjAGM9h3J3ouy', 'created': 1759908448, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"codes":[{"slug":"walking-miracle-gratitude-for-life-38","name":"Walking miracle gratitude for life after chronic illness","description":"This code captures the deep appreciation and awe the participant feels about living a life they once only dreamed of due to recovering from chronic illness. They describe moments of enjoying life with childlike wonder and being grateful each day despite small setbacks.","quotes":["I\'m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible","this joy is so enlivening and it\'s like every day it\'s like you\'re winning the race every day you\'re like yes","It\'s like being like when you watch a six year old wandering through the world ... these new eyes where you just get to almost be childlike again"]},{"slug":"difficulty-relating-to-healthy-friends-81","name":"Difficulty relating to healthy friends post illness","description":"The participant experiences detachment and struggle maintaining friendships with physically healthy friends who complain about their lives. They find it hard to relate to people who seem to take their health for granted and have difficulty understanding those who choose not to engage in activities like working out, which the participant once loved but had to give up.","quotes":["It is hard though to have friends who\'ve never been through it ... and they complain about their lives and i just feel such a detachment sometimes","Sometimes it\'s hard for me to be their friend now because I\'m like you have it all","I really struggle with people who seem physically able to go to the gym but just choose not to","I would give anything to (work out) because i love working out so that\'s one of my things that i really miss"]},{"slug":"diagnosis-delay-and-misdiagnosis-60","name":"Frustration with delayed diagnosis and misdiagnosis","description":"The participant recounts the challenges in receiving an accurate diagnosis. Initially diagnosed with fibromyalgia, their fatigue symptoms were overlooked which delayed appropriate treatment. They express frustration with the medical system\'s lack of understanding and care for their chronic fatigue symptoms over many years.","quotes":["I was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued","no one would even really treat it i don\'t think they really what to do","It took a while before i even got the chronic fatigue diagnosis but no one would even really treat it for many years"]},{"slug":"self-advocacy-for-healthcare-72","name":"Self advocacy and research to access better healthcare","description":"The participant took an active role in managing their health by rehabilitating themselves, researching doctors, and eventually moving to access better medical care. 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This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \'code\' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\'ll let her go into details of that but i\'m just really excited to have you here welcome katie thank you for having me i\'m so excited to meet with you and to be here i am really excited to hear more about your story and i\'m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\'t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\'re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\'m excited that\'s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\'t even know because i couldn\'t even picture my future before i think it was too hard to dream or hope and now it\'s like who knows what will happen it\'s just amazing if i\'m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\'s stressing you out does not matter it does not matter yeah absolutely and it\'s it\'s funny that\'s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\'s like every day it\'s like you\'re winning the race every day you\'re like yes\n\nSPEAKER_00: it\'s like being like when you watch a six year old wandering through the world and they\'re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\'t go away yeah i don\'t think i don\'t think it will but it\'s something i do think about often\n\nSPEAKER_00: i think i\'ll appreciate this it is hard though to have friends who\'ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\'s hard for me to be their friend now because i\'m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\'s one of my things that i really miss so when i can see people who could and just did it of course i don\'t know their life and i don\'t know what they\'re facing and they\'ve got their own reasons and limitations i have no clue what\'s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\'m like that\'s all i want to be able to do like i was my life and my identity but yeah you\'re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\'m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\'re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\'s because it\'s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\'t treat it it\'s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\'t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\'t walk i just wasn\'t recovering sleep so i would be working for about every i don\'t know two to four months and then i would end up collapsing and i just couldn\'t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\'s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\'t think they really what to do they looked at just blood work ology it just really i wasn\'t really getting care for it for many years yeah unfortunately such a common story i\'m sure you\'ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\'s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\'t fight and that was the missing link why couldn\'t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\'s what brought me to my other doctor who\'s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\'s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\'t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\'s degree which you know is a lot it\'s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\'t even know how i didn\'t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\'m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\'t at all like my childhood experience it\'s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\'d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\'m warning signs i wasn\'t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\'m sure it\'s not everybody but i imagine you\'ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\'re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\'t safe i didn\'t feel safe riding the subway home because i thought i\'d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\'s really important because i can\'t get my cells oxygen if i\'m not so i know movement is a very hot topic and it is very controversial because it\'s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\'m curious what diet changes ended up helping for you not because i think necessarily it\'s the key for anyone else but i think it\'s good for people to see that there are different paths to health through diet for people and it is very much individual so i\'m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\'t know if that\'s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\'t know if i\'m familiar with nightshades but i did have a problem with those for a while nightshades that\'s things like what is that is that tomatoes and bell peppers or what is yes it\'s tomato potatoes eggplant the one i can\'t take i can\'t tolerate anymore i can\'t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\'s kind of scary at first you\'re like what am i going to have left but eggs were bothering me for a while they don\'t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\'s encouraging that you didn\'t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\'s very hard to do i did it as a last resort after years of suffering it wasn\'t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\'s just hard to meal plan hard to it\'s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\'re so desperate you just need you\'ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\'t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\'t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\'t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\'s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\'s very it\'s very hard to fight fight that but once i got broke through you\'re right i didn\'t feel those cravings the same way and doesn\'t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\'s just incredible to have this healthy relationship with food where it\'s not a battle and you\'re not trying to force yourself to eat the right things okay so i just want to make sure i\'m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\'s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\'s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\'m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\'re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\'s confusing because we\'re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\'s just don\'t move but i found i couldn\'t rest my way out of this i couldn\'t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\'t get me anywhere i agree i did the same thing so it\'s great there are so many things that did work for you were there some things that you tried that didn\'t work for you and what were they\n\nSPEAKER_00: that doesn\'t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\'m on and i\'m going to real honest the supplements i take are based on my blood work and my genetic profile they\'re not necessarily applicable to else it doesn\'t\n\nSPEAKER_00: and i don\'t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\'s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\'s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\'s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\'s not a regular person caffeine crash with cfs it seems to be amplified it\'s just\n\nSPEAKER_00: yeah and it\'s a good point about the symptoms too i think we\'re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\'s a balance you do have to treat some of them you know like for me i wasn\'t sleeping and i did all the things under the sun that you\'re supposed to do and it just wasn\'t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\'m not against that but i\'m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\'s it\'s really hard i can\'t break any of it most of it down there wasn\'t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\'t have any children so i don\'t have anything to offer on this but i\'m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\'d be pregnant i would have thought that that\'s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\'t want to be a burden more of a burden to my husband i didn\'t want the financial responsibility i didn\'t think i could be a good mom i didn\'t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\'s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\'t want to live in fear\n\nSPEAKER_00: because there\'s not a lot of research out there doctors couldn\'t make any promises to me\n\nSPEAKER_00: you\'ll be fine and i\'m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\'s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\'s normal to have headaches when you\'re pregnant it\'s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\'s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\'s been definitely an interesting experience yeah i can only imagine it\'s something that i experience even not being pregnant i imagine it\'s something we all experience to a certain extent we\'re just a bit i don\'t want to say paranoid but we\'ve been through a lot so it\'s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\'s a constant reminder i have to have for myself that getting better doesn\'t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\'s coworkers have gestate had gestation like but it\'s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\'s it\'s natural i think anyone\'s going to and i would hope and i would imagine that as time passes we\'ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\'ve been through i always love knowing you know how this has changed you how it\'s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\'t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\'re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\'m thankful for that appreciate life more i don\'t know quite how to put this but it\'s a bit of a conflicted relationship isn\'t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\'s something that is so horrible and so horrendous and you wouldn\'t wish on anybody but at the same time it\'s hard to imagine your life what it would be like if it hadn\'t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\'m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\'m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\'s happening either way there\'s no taking it away there\'s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\'ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\'s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\'t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\'s so much reason to be hopeful and i love that there\'s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\'t find any this was twelve years ago or something i didn\'t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\'s crazy we\'re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\'s just really nice it\'s really nice to see so if you could go back in time to when this first all happened i\'m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\'t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\'t want to believe that part of me rejected it but you can\'t unhear it so it messed with my mind and if i know no that\'s not true you can\'t limit a person\'s potential you don\'t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\'s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\'t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\'s degree and chronic illness so i don\'t know if there\'s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\'ve never heard that before like getting a bachelor\'s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\'s it\'s the really the biggest part of the fuel because this is such a marathon it really is it\'s really hard it\'s exhausting it\'s a lot of work it\'s boring it\'s lonely it\'s stressful it\'s depressing and if you don\'t even know that it\'s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\'t even know if it\'s possible most really bad days or weeks or months it\'s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\'t know you know what everyone\'s prognosis is and we don\'t know what everyone\'s journey is going to be so you obviously can\'t say for certain what\'s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\'ve had goosebumps you brought me to tears it\'s just really wonderful how far you\'ve come and it\'s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\'s my pleasure i love it i love what you\'re doing i\'m so happy i got to meet liz and i\'ve gotten to meet oh my goodness so many people it\'s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\'s just so i think about somebody i can picture somebody and they\'re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\'s funny i don\'t i don\'t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\'t wrap their head around someone could feel because they\'ve been told so many times\n\nSPEAKER_00: and i\'m like that\'s why the more pictures we can show them of people so it\'s not just me saying it a whole group of people stepping forward that it\'s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\'m not sure you ever really had it or you probably clearly you weren\'t all that sick or that doesn\'t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\'t like that most people you know are there\'s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\'t wrap their head around it no this can\'t be you\'re not like me we\'re not the same that\'s not possible i don\'t know what\'s happening there but that\'s not it so i try not to be like defensive i\'m like whatever i know my life like i don\'t have anything to prove that\'s such a good attitude to have and that\'s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\'m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\'s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\'ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\'d love to hear your thoughts we\'d love to hear from you if you have any questions for katie i\'m sure she\'d be happy to answer them so yeah so please leave your thoughts leave your comments below we\'d really love to hear from you and if you enjoyed this video if you think it\'s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\'s get these stories out there let\'s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\'m sure could use a little inspiration sent their way so if we\'re not already friends on instagram please come find katie come find myself we\'d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\'s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\'t already subscribed make sure to do so because you\'re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n</text>\n\n--\n\ncodes=[Code(slug=\'walking-miracle-gratitude-for-life-38\', name=\'Walking miracle gratitude for life after chronic illness\', description=\'This code captures the deep appreciation and awe the participant feels about living a life they once only dreamed of due to recovering from chronic illness. They describe moments of enjoying life with childlike wonder and being grateful each day despite small setbacks.\', quotes=["I\'m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible", "this joy is so enlivening and it\'s like every day it\'s like you\'re winning the race every day you\'re like yes", "It\'s like being like when you watch a six year old wandering through the world ... these new eyes where you just get to almost be childlike again"]), Code(slug=\'difficulty-relating-to-healthy-friends-81\', name=\'Difficulty relating to healthy friends post illness\', description=\'The participant experiences detachment and struggle maintaining friendships with physically healthy friends who complain about their lives. They find it hard to relate to people who seem to take their health for granted and have difficulty understanding those who choose not to engage in activities like working out, which the participant once loved but had to give up.\', quotes=["It is hard though to have friends who\'ve never been through it ... and they complain about their lives and i just feel such a detachment sometimes", "Sometimes it\'s hard for me to be their friend now because I\'m like you have it all", \'I really struggle with people who seem physically able to go to the gym but just choose not to\', "I would give anything to (work out) because i love working out so that\'s one of my things that i really miss"]), Code(slug=\'diagnosis-delay-and-misdiagnosis-60\', name=\'Frustration with delayed diagnosis and misdiagnosis\', description="The participant recounts the challenges in receiving an accurate diagnosis. Initially diagnosed with fibromyalgia, their fatigue symptoms were overlooked which delayed appropriate treatment. They express frustration with the medical system\'s lack of understanding and care for their chronic fatigue symptoms over many years.", quotes=[\'I was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued\', "no one would even really treat it i don\'t think they really what to do", \'It took a while before i even got the chronic fatigue diagnosis but no one would even really treat it for many years\']), Code(slug=\'self-advocacy-for-healthcare-72\', name=\'Self advocacy and research to access better healthcare\', description=\'The participant took an active role in managing their health by rehabilitating themselves, researching doctors, and eventually moving to access better medical care. They found a nurse practitioner who performed comprehensive blood work and helped identify underlying infections. This proactive approach was crucial for their eventual diagnosis and treatment plan.\', quotes=[\'I kept rehabilitate myself ... researching doctors researching as much as i could\', "Eventually i moved from new york city back home to buffalo and that\'s where i got linked with some really great doctors", \'She was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that\']), Code(slug=\'genetic-condition-discovery-and-treatment-75\', name=\'Discovery and treatment of genetic mitochondrial disease\', description=\'The participant was diagnosed with a rare mitochondrial disease through full genome testing. This diagnosis explained their inability to fight infections and fatigue. Treatment included a mitochondrial cocktail which helped their body produce mitochondria and regain strength to combat infections, marking a turning point in their recovery.\', quotes=[\'I did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven\', "He put me on the cocktail which helped basically my body wasn\'t producing mitochondria i could never fight infections", \'By him supplementing and boosting my mitochondria i could now fight the infections\']), Code(slug=\'drastic-lifestyle-changes-for-recovery-81\', name=\'Drastic lifestyle changes including diet and environment for recovery\', description=\'The participant emphasizes the importance of significant lifestyle modifications for healing including an elimination diet, gradual movement rehabilitation, and removing environmental toxins. Specific dietary changes involved cutting out dairy, gluten, sugar, and nightshades, which were once inflammatory but sometimes reintroduced gradually.\', quotes=[\'I had to dramatically change my diet ... use food as medicine as a mindset\', \'I removed all toxic ingredients immunotoxic i water filtration system on my house\', \'Dairy gluten and sugar were main offenders and nightshades bothered me for a while\']), Code(slug=\'overcoming-sugar-addiction-for-healing-56\', name=\'Overcoming intense sugar addiction to support healing\', description=\'The participant describes an intense physical addiction to sugar that disrupted their health and sleep patterns. Through gut healing and probiotics, cravings diminished, allowing them to develop a healthier relationship with food and regain control over their eating habits, marking an important step in recovery.\', quotes=[\'Sugar was a massive one for me and sugar was a tough one for me ... i clearly had a physical addiction\', \'I would get up in the middle of the night every single night and eat sugar\', \'Once my body started healing the cravings went away\']), Code(slug=\'movement-therapy-as-gentle-rehab-63\', name=\'Movement therapy as gentle rehabilitation rather than exercise\', description=\'The participant highlights the importance of very gradual and gentle movement therapy rather than typical exercise. They emphasize the challenges of balancing activity and rest in chronic fatigue syndrome, noting that even a few minutes of movement can be critical for oxygenation and lymphatic flow while avoiding pushing to the point of relapse.\', quotes=[\'I had to gradually increase my ability to move\', \'My exercise program was so small you know it was one to two minutes a day and in the beginning not even every single day\', \'I couldn’t rest my way out of this i couldn’t just lay in bed or lay on the couch all day\']), Code(slug=\'psychological-impact-and-growth-from-illness-80\', name=\'Psychological impact and personal growth from chronic illness experience\', description=\'The participant reflects on how chronic illness fundamentally changed their identity, values, and spirituality. They describe feelings of humility, acceptance, and deeper self-worth beyond professional achievements. The illness brought perspective, spiritual growth, gratitude, and a renewed appreciation for life and relationships.\', quotes=[\'It humbled me changed me i maybe was prideful before i wouldn’t say i had a spirituality before\', \'I had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\', \'this illness catapults our growth and puts us in a better direction\']), Code(slug=\'fear-and-anxiety-during-pregnancy-after-illness-64\', name=\'Fear and anxiety about pregnancy symptoms being illness relapse\', description=\'The participant shares the anxiety and uncertainty during pregnancy about whether normal pregnancy symptoms like fatigue and headaches signal illness relapse. They learn to differentiate normal pregnancy experiences from chronic illness symptoms, practicing self-compassion and cautious optimism about their health journey.\', quotes=["I keep reminding myself these are normal symptoms it\'s triggering sometimes to be like is this normal fatigue or is this going back", \'I keep reminding myself no it’s normal to have headaches when you’re pregnant it’s normal to feel tired\', \'It has been quite a journey i keep reminding myself sometimes\']), Code(slug=\'hope-and-positivity-in-chronic-illness-recovery-57\', name=\'Hope and positivity through seeing others recover from chronic illness\', description=\'The participant expresses how seeing recovery stories from others provides essential hope and motivation for their own healing journey. They highlight the loneliness and despair without such examples and stress the importance of community and shared experiences in sustaining perseverance through chronic illness.\', quotes=["It\'s so nice to see so many people that are getting past these things", \'I remember when i first got sick i was trying to find recovery stories and i just couldn’t find any\', "People start reaching out to me it\'s crazy like hey so nice to meet you you recovered as well"]), Code(slug=\'self-empowerment-through-knowledge-and-faith-64\', name=\'Self empowerment through knowledge acquisition and faith in recovery\', description="The participant credits their recovery journey to extensive self-education about their condition combined with their faith and spiritual trust. They emphasize the importance of trusting the healing process and rejecting limiting prognoses, comparing learning about illness to earning a \'bachelor’s degree\' in chronic illness.", quotes=[\'I would just tell myself to trust that process\', \'I had to go through all those years of research and learning\', \'It was like getting a bachelor’s degree in chronic illness\', \'You cannot limit a limitless guy\'])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \'theme\' is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \'share\' codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\'s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clichés, generalizations. Avoid the word \'Navigating\' in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json' output={'themes': [{'name': 'Deep gratitude and awe for renewed life after chronic illness recovery', 'description': 'This theme captures the participant\'s overwhelming sense of gratitude and amazement about living a life once only dreamed of due to chronic illness recovery. They describe moments of feeling like a "walking miracle," appreciating life with childlike wonder, and maintaining joy despite setbacks. This theme highlights how the participant values each day as a precious victory and reflects a profound shift in perspective and appreciation for life.', 'code_slugs': ['walking-miracle-gratitude-for-life-38']}, {'name': 'Struggle with detachment from healthy friends who take wellness for granted', 'description': 'Participants feel a sense of detachment and difficulty relating to friends who have never experienced chronic illness, especially when those friends complain about life or neglect physical health. The participant misses activities like working out and struggles to understand those who are able but unwilling to engage in wellness. This theme reflects the emotional distance and isolation felt in social relationships post-illness recovery.', 'code_slugs': ['difficulty-relating-to-healthy-friends-81']}, {'name': 'Frustration over medical misdiagnosis and delayed recognition of chronic fatigue symptoms', 'description': 'The participant recounts the prolonged and frustrating journey through misdiagnosis and dismissal by medical professionals, initially diagnosed with fibromyalgia while fatigue symptoms were overlooked. This theme underscores the experience of receiving little help or understanding over many years, contributing to a sense of neglect and uncertainty in the healthcare process.', 'code_slugs': ['diagnosis-delay-and-misdiagnosis-60']}, {'name': 'Active self-advocacy and persistence in seeking knowledgeable healthcare providers', 'description': "This theme reflects the participant's proactive efforts to manage their health through self-rehabilitation, researching physicians, relocating for better care, and collaborating with investigative providers. The participant describes working with specialists who carefully examined underlying infections and genetic factors, showing determination and resourcefulness in overcoming healthcare system challenges.", 'code_slugs': ['self-advocacy-for-healthcare-72', 'genetic-condition-discovery-and-treatment-75']}, {'name': 'Major lifestyle changes including diet, movement, and toxin avoidance for healing', 'description': 'Participants undertake drastic modifications such as elimination diets targeting dairy, gluten, sugar, and nightshades, coupled with gentle movement therapies and removal of environmental toxins. This theme captures the careful, individualized approach to healing through body-focused changes and gradual physical rehabilitation, emphasizing patience and persistence in recovery.', 'code_slugs': ['drastic-lifestyle-changes-for-recovery-81', 'overcoming-sugar-addiction-for-healing-56', 'movement-therapy-as-gentle-rehab-63']}, {'name': 'Personal transformation and spiritual growth through chronic illness experience', 'description': 'This theme highlights the profound psychological and spiritual shifts participants undergo, including humility, acceptance of help, redefined self-worth beyond career achievements, and a deepened faith. The illness is seen as a catalyst for personal growth, reshaping identity and spirituality, fostering gratitude, and instilling new values about life and relationships.', 'code_slugs': ['psychological-impact-and-growth-from-illness-80', 'self-empowerment-through-knowledge-and-faith-64']}, {'name': 'Anxiety and self-compassion in distinguishing pregnancy symptoms from relapse fears', 'description': 'Participants describe the anxiety of interpreting pregnancy-related symptoms such as fatigue and headaches within the context of past chronic illness. 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| item_3 | item_3 | 3 | You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n</text>\nAlways use the tools/JSON response.\n\n```json | {'themes': [{'name': 'Overwhelming fear and isolation at initial chronic fatigue onset', 'description': 'Participants describe the early stages of chronic fatigue as a scary and confusing experience, feeling a bit fluy, strange, and scared. They face emotional challenges, grief and uncertainty as symptoms emerge without clear diagnosis, compounded by isolation from friends and the university environment. The loss of normal activities and social contact leads to a tough, lonely time where only family remains as support.', 'code_slugs': ['scary-and-confusing-early-illness-experience', 'feeling-isolated-due-to-illness']}, {'name': 'Struggling with misdiagnosis and longing for real understanding', 'description': 'Participants recount early experiences of medical dismissal, such as doctors attributing symptoms solely to depression. They recognize the emotional impact but feel there is more going on physically. This misunderstanding leads to frustration and a strong desire to find real explanations and effective healing approaches beyond conventional medicine.', 'code_slugs': ['rejection-of-depression-diagnosis-and-emotional-awareness']}, {'name': 'Clinging to hope through meditation and fragmented relief efforts', 'description': 'Engaging in meditation, yoga, breath work, and guided relaxation offers participants temporary relief and moments of feeling better, providing hope that some control over their health is possible. Yet, these benefits are often short-lived and unstable, requiring ongoing effort to find deeper shifts in recovery.', 'code_slugs': ['hope-from-meditation-and-yoga-practices']}, {'name': 'Desperation spurs trying diverse alternative therapies seeking cure', 'description': 'Out of urgency to recover, participants try multiple alternative therapies such as acupuncture, reiki, nutrition therapy, and even colon hydrotherapy, often with mixed or limited success. This represents a willingness to explore all possible avenues despite invasiveness or skepticism, driven by a deep yearning to reclaim health.', 'code_slugs': ['desperation-leads-to-trying-various-alternative-therapies']}, {'name': 'Uncovering and releasing suppressed anger and old trauma for healing', 'description': 'Participants identify profound suppression of anger and unresolved trauma as pivotal barriers to recovery. Recognizing patterns of avoiding conflict and holding unexpressed emotions leads to emotional breakthroughs. This process helps participants address the mind-body connection and understand physical symptoms as manifestations of trauma responses, enhancing self-awareness and healing potential.', 'code_slugs': ['realization-of-suppressed-anger-and-unresolved-trauma', 'mind-body-connection-and-trauma-understanding']}, {'name': 'Learning to communicate authentically while setting healthy boundaries', 'description': 'Recovery journeys involve participants learning how to be authentic in expressing their feelings and needs without fearing upsetting others. Non-violent communication and boundary-setting skills help them balance self-care and relationships, moving from suppression to gentle assertiveness and honoring personal needs.', 'code_slugs': ['learning-authentic-self-expression-and-setting-boundaries']}, {'name': 'Integrating profound spiritual awakenings and meditation challenges', 'description': "Spiritual experiences such as kundalini awakening, mystical meditation, and out-of-body sensations play a significant but destabilizing role in participants' recovery. While these moments connect them deeply to the universe and provide meaningful insights, they sometimes interfere with daily functioning, necessitating a balance between spiritual growth and practical life demands.", 'code_slugs': ['spiritual-experience-as-part-of-healing-journey']}, {'name': 'Sustained self-care and emotional regulation beyond recovery', 'description': 'Even years after initial healing, participants continue to manage emotional, trauma-related, or dissociative symptoms through therapeutic work, nature exposure, and self-regulation techniques. This ongoing effort ensures balance and well-being remains, reflecting an enduring commitment to health maintenance and vigilance against relapse.', 'code_slugs': ['ongoing-self-care-and-regulation-post-recovery']}, {'name': 'Healing journey inspires career change into coaching and therapy work', 'description': "The prolonged recovery experience deeply influences participants' career paths, leading them to pursue therapeutic coaching, bodywork, and modalities like internal family systems. They integrate personal healing insights professionally, remaining lifelong learners who apply supportive practices to help others on their health journeys.", 'code_slugs': ['career-shift-driven-by-healing-experience']}, {'name': 'Recognizing ancestral trauma’s influence on illness and healing paths', 'description': 'Participants acknowledge the impact of ancestral and family lineage trauma on chronic fatigue development and recovery. They observe that illness can be rooted in wider family systems rather than just personal history, gaining awareness of generational health patterns and employing family constellation approaches to understand systemic illness dynamics.', 'code_slugs': ['recognizing-familial-and-ancestral-trauma-impact-on-health']}]} | {'themes': [{'name': 'Overwhelming fear and isolation at initial chronic fatigue onset', 'description': 'Participants describe the early stages of chronic fatigue as a scary and confusing experience, feeling a bit fluy, strange, and scared. They face emotional challenges, grief and uncertainty as symptoms emerge without clear diagnosis, compounded by isolation from friends and the university environment. The loss of normal activities and social contact leads to a tough, lonely time where only family remains as support.', 'code_slugs': ['scary-and-confusing-early-illness-experience', 'feeling-isolated-due-to-illness']}, {'name': 'Struggling with misdiagnosis and longing for real understanding', 'description': 'Participants recount early experiences of medical dismissal, such as doctors attributing symptoms solely to depression. They recognize the emotional impact but feel there is more going on physically. This misunderstanding leads to frustration and a strong desire to find real explanations and effective healing approaches beyond conventional medicine.', 'code_slugs': ['rejection-of-depression-diagnosis-and-emotional-awareness']}, {'name': 'Clinging to hope through meditation and fragmented relief efforts', 'description': 'Engaging in meditation, yoga, breath work, and guided relaxation offers participants temporary relief and moments of feeling better, providing hope that some control over their health is possible. Yet, these benefits are often short-lived and unstable, requiring ongoing effort to find deeper shifts in recovery.', 'code_slugs': ['hope-from-meditation-and-yoga-practices']}, {'name': 'Desperation spurs trying diverse alternative therapies seeking cure', 'description': 'Out of urgency to recover, participants try multiple alternative therapies such as acupuncture, reiki, nutrition therapy, and even colon hydrotherapy, often with mixed or limited success. This represents a willingness to explore all possible avenues despite invasiveness or skepticism, driven by a deep yearning to reclaim health.', 'code_slugs': ['desperation-leads-to-trying-various-alternative-therapies']}, {'name': 'Uncovering and releasing suppressed anger and old trauma for healing', 'description': 'Participants identify profound suppression of anger and unresolved trauma as pivotal barriers to recovery. Recognizing patterns of avoiding conflict and holding unexpressed emotions leads to emotional breakthroughs. This process helps participants address the mind-body connection and understand physical symptoms as manifestations of trauma responses, enhancing self-awareness and healing potential.', 'code_slugs': ['realization-of-suppressed-anger-and-unresolved-trauma', 'mind-body-connection-and-trauma-understanding']}, {'name': 'Learning to communicate authentically while setting healthy boundaries', 'description': 'Recovery journeys involve participants learning how to be authentic in expressing their feelings and needs without fearing upsetting others. Non-violent communication and boundary-setting skills help them balance self-care and relationships, moving from suppression to gentle assertiveness and honoring personal needs.', 'code_slugs': ['learning-authentic-self-expression-and-setting-boundaries']}, {'name': 'Integrating profound spiritual awakenings and meditation challenges', 'description': 'Spiritual experiences such as kundalini awakening, mystical meditation, and out-of-body sensations play a significant but destabilizing role in participants' recovery. While these moments connect them deeply to the universe and provide meaningful insights, they sometimes interfere with daily functioning, necessitating a balance between spiritual growth and practical life demands.', 'code_slugs': ['spiritual-experience-as-part-of-healing-journey']}, {'name': 'Sustained self-care and emotional regulation beyond recovery', 'description': 'Even years after initial healing, participants continue to manage emotional, trauma-related, or dissociative symptoms through therapeutic work, nature exposure, and self-regulation techniques. This ongoing effort ensures balance and well-being remains, reflecting an enduring commitment to health maintenance and vigilance against relapse.', 'code_slugs': ['ongoing-self-care-and-regulation-post-recovery']}, {'name': 'Healing journey inspires career change into coaching and therapy work', 'description': 'The prolonged recovery experience deeply influences participants' career paths, leading them to pursue therapeutic coaching, bodywork, and modalities like internal family systems. They integrate personal healing insights professionally, remaining lifelong learners who apply supportive practices to help others on their health journeys.', 'code_slugs': ['career-shift-driven-by-healing-experience']}, {'name': 'Recognizing ancestral trauma’s influence on illness and healing paths', 'description': 'Participants acknowledge the impact of ancestral and family lineage trauma on chronic fatigue development and recovery. They observe that illness can be rooted in wider family systems rather than just personal history, gaining awareness of generational health patterns and employing family constellation approaches to understand systemic illness dynamics.', 'code_slugs': ['recognizing-familial-and-ancestral-trauma-impact-on-health']}]} | [(type, chatter), (results, {'codes': prompt="You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n</text>\nAlways use the tools/JSON response.\n\n```json" output={'codes': [{'slug': 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'quotes': ["i've done lots of different kinds of therapeutic and coaching trainings", 'been working in this field myself nearly twenty years', 'i do keep up quite a few of the practices that support me to heal and new practices']}, {'slug': 'recognizing-familial-and-ancestral-trauma-impact-on-health', 'name': 'Recognizing familial and ancestral trauma impact on health', 'description': 'Participant highlights the role of ancestral and family line trauma influencing illness patterns, recognizing wider systemic and generational factors contributing to chronic fatigue symptoms.', 'quotes': ["a lot of my trauma wasn't necessarily personal but was ancestral... took on from my family line", 'sometimes... an illness in one person might not be the root but a wider family system issue']}]} completion={'id': 'chatcmpl-COIs4c0VVXEqpGvZq6nPdJ8m2sHPd', 'created': 1759908448, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': 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This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \'code\' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. 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Be concise. \n\n<text>\nSPEAKER_01: hey guys if you\'re struggling with the overwhelming challenges of chronic fatigue please know that you\'re not alone and what\'s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\'m raylan if you\'re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\'ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\'m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\'s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\'t feel well at all didn\'t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\'t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\'t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\'t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\'ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\'t know what was happening i didn\'t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\'t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\'s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\'t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\'s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\'d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\'d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\'t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\'s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\'s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\'t seem to do anything for me at that point but maybe it just wasn\'t the right thing at that point you know but later on i do think acupuncture did help a little bit i\'m not quite anything against chinese medicine or acupuncture but it was yeah that didn\'t didn\'t particularly do anything in those early stages i\'m trying to remember i mean i would at some point i started like trying one therapy after another you know i\'d go for reiki and i\'d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\'t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\'t that helpful i don\'t think yeah i don\'t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\'ve never had it done i didn\'t go for it but it was so in a way it was kind of funny that i hadn\'t even booked in for this session but i didn\'t think i had i thought i\'d booked in to see a nutritional therapist again because my dad had told me that she\'d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\'ve never tried it you haven\'t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\'re anyways it\'s the stuff that we all tried well it\'s just it\'s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\'s about these days but back then i remember reading an article about how cold can help me and i\'d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\'s quite funny\n\nSPEAKER_01: i know you think about it we\'re going through this incredible suffering we have all these scary symptoms and then we\'re getting hoses put up our bums and laying in breathing full bath tubs it\'s like as if the suffering isn\'t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\'s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\'m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\'t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\'t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\'re very similar i can\'t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\'s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\'ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\'t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\'d go a little bit like a bit fatigue again and then i\'d have to kind of work on something and then i\'d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\'s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\'s definitely a theme i couldn\'t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\'s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\'t realize in our modern day society that we\'re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\'t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\'s not okay to feel this way or it\'s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\'s fascinating how the body creates all these symptoms as a new distraction or is it because it\'s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\'t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\'t handle the anger so i remember just being like can\'t feel this i don\'t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\'s because i\'ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\'s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\'s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\'s so interesting that so many of us go on this journey let\'s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\'s it\'s fascinating i don\'t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\'s true i know this is the case for so many people it\'s still every time i hear it my head kind of explodes you know yeah you\'re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\'t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\'ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\'t know if you\'ve had an old channel who shared anything like this i have had the odd client that\'s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\'d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\'s hard to describe it but i have also witnessed some other people who have also had that experience so it\'s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\'s a really\n\nSPEAKER_01: good point yeah because then once you\'re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\'t been through what you\'ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\'ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\'ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\'ve had a child i\'ve got a son who\'s ten yeah and life\'s been rich and great and i\'ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\'s been lots of great things i\'ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\'s been life\'s been good and i feel like i\'ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\'m a lifelong learner as well i\'m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\'m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\'m curious because a lot of us think of recovery from these conditions like there\'s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\'s more of an ongoing journey so what\'s that been like for you is there self care things you need to still do you know is there any part of you that\'s worried about you know becoming unwell again what\'s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\'s been maybe seventeen years since i\'d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\'t always understand it would be like trauma type symptoms would come up like i\'d feel a bit shut down or a bit dissociated and i wouldn\'t know why and then i\'d have to go and do some work on myself with a practitioner or perhaps i\'d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\'t all about being chronically sick and definitely wasn\'t about being chronic sick anymore like i don\'t worry about that and i didn\'t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\'ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\'s kind of been a lot of my work actually has been a coach the gupta program more recent years i\'ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\'s just incredible you know over the years the many years that you\'ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\'s path to recovery and what are some of the biggest takeaways from the work that you\'ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\'s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\'t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\'s a piece sometimes i see in clients that perhaps isn\'t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\'s ill and their grandmother was ill or something like that what\'s going on in that family line that\'s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\'s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\'s an interesting\n\nSPEAKER_01: perspective it\'s fascinating i remember recently in animals and they can trace back if they have let\'s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\'m sure i\'m oversimplifying what you\'re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\'t understand fully about what impacts our health and our world it\'s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\'ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\'t already signed up for my newsletter i know there\'s a lot of recovery interviews and it\'s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\'t work the key resources that got them there so if you\'re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\'re not people watching if you\'re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\'s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\'re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n</text>\n\n--\n\ncodes=[Code(slug=\'scary-and-confusing-early-illness-experience\', name=\'Scary and confusing early illness experience\', description=\'Participant describes the initial onset of chronic fatigue as confusing, frightening, and strange with symptoms that were hard to understand and manage. She was overwhelmed by sudden health decline and had to leave university, indicating a disruptive and scary period.\', quotes=["i just didn\'t feel well at all... felt a bit fluy felt a bit strange felt a bit scared because it felt really weird", "i didn\'t know what was going on", "it was a really scary time definitely a time that i feel like i\'ve grieved and worked with as i healed"]), Code(slug=\'feeling-isolated-due-to-illness\', name=\'Feeling isolated due to illness\', description=\'Participant felt isolated because she had to return home and was separated from her friends who were still attending university, leading to feelings of loneliness with limited social support beyond family.\', quotes=["all my friends from home had gone to university all my friends from university were still at university so initially i didn\'t really have anyone there other than my family", \'it was a very tough time\']), Code(slug=\'rejection-of-depression-diagnosis-and-emotional-awareness\', name=\'Rejection of depression diagnosis and emotional awareness\', description="Participant rejected doctors\' initial diagnosis of depression as the sole cause, sensing a deeper underlying physical illness despite emotional challenges and some depressive feelings related to her illness.", quotes=[\'one of the first doctors said she just thought i was depressed that was it\', "i knew it wasn\'t just depression i knew there was emotion about feeling unwell"]), Code(slug=\'hope-from-meditation-and-yoga-practices\', name=\'Hope from meditation and yoga practices\', description=\'Early engagement with meditation, yoga, and breath work brought short-lived improvements, offering participant moments of hope and relief, though benefits were often temporary and inconsistent over long recovery.\', quotes=[\'i thought i did think quite early on well perhaps meditation and yoga can help me heal\', \'doing the alternate nostril breathing and noticing i felt different after doing it\', "sometimes i\'d notice i felt considerably better after doing one"]), Code(slug=\'desperation-leads-to-trying-various-alternative-therapies\', name=\'Desperation leads to trying various alternative therapies\', description=\'Participant pursued numerous alternative therapies out of desperation including acupuncture, reiki, nutrition therapy, and colon hydrotherapy, often with limited or mixed success, reflecting urgent search for a cure.\', quotes=["i\'d go for reiki and i\'d go for this and i go for that", \'i even flew to america...to work with a healer\', \'just loads of things i was i was so desperate to be well\']), Code(slug=\'realization-of-suppressed-anger-and-unresolved-trauma\', name=\'Realization of suppressed anger and unresolved trauma\', description=\'Participant identified a deep pattern of suppressing anger and unreleased trauma impacting her recovery, acknowledging emotional blocks and the role of unresolved feelings in her physical symptoms.\', quotes=["i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\'t realize was there", \'one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs\']), Code(slug=\'mind-body-connection-and-trauma-understanding\', name=\'Mind-body connection and trauma understanding\', description=\'Participant found significant healing through acknowledging the mind-body link, understanding symptoms as manifestations of trauma such as freeze responses, and exploring emotional triggers underlying physical states.\', quotes=[\'it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom\', \'a lot of it was the impact of trauma on my system manifesting physically like a freeze response\', \'started to really understand the mind body connection\']), Code(slug=\'learning-authentic-self-expression-and-setting-boundaries\', name=\'Learning authentic self-expression and setting boundaries\', description=\'Recovery involved learning to express authentic emotions and needs without fear of upsetting others, using communication skills like non-violent communication to balance self-care and relationships.\', quotes=[\'learning to be more myself more authentic\', \'learning non violent communication... a way that i could communicate my feelings without it also being too much for someone else\', "it\'s okay to have needs"]), Code(slug=\'spiritual-experience-as-part-of-healing-journey\', name=\'Spiritual experience as part of healing journey\', description=\'Spiritual awakening, meditation, and mystical experiences were deeply meaningful but sometimes destabilizing aspects of the recovery journey, requiring learning to balance spiritual insights with daily functioning.\', quotes=[\'i had a kundalini or spiritual some kind of spiritual awakening\', \'sometimes i felt like i left my body and i was like connecting with the whole universe\', \'i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way\']), Code(slug=\'ongoing-self-care-and-regulation-post-recovery\', name=\'Ongoing self-care and regulation post recovery\', description=\'Even years after recovery, participant still needed to manage emotional and trauma-related symptoms with self-regulation strategies like nature exposure and therapeutic work to maintain balance and well-being.\', quotes=[\'i did have periodically sort of what i would now describe as trauma type symptoms\', "i\'d have to go and do some work on myself with a practitioner or perhaps i\'d go and spend some nighttime in nature", \'that can still happen today but not to the extent it was\']), Code(slug=\'career-shift-driven-by-healing-experience\', name=\'Career shift driven by healing experience\', description="Participant\'s prolonged healing journey influenced her career choice toward coaching and therapeutic work, integrating personal recovery insights into professional roles and continuous learning.", quotes=["i\'ve done lots of different kinds of therapeutic and coaching trainings", \'been working in this field myself nearly twenty years\', \'i do keep up quite a few of the practices that support me to heal and new practices\']), Code(slug=\'recognizing-familial-and-ancestral-trauma-impact-on-health\', name=\'Recognizing familial and ancestral trauma impact on health\', description=\'Participant highlights the role of ancestral and family line trauma influencing illness patterns, recognizing wider systemic and generational factors contributing to chronic fatigue symptoms.\', quotes=["a lot of my trauma wasn\'t necessarily personal but was ancestral... took on from my family line", \'sometimes... an illness in one person might not be the root but a wider family system issue\'])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \'theme\' is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \'share\' codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\'s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clichés, generalizations. Avoid the word \'Navigating\' in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json' output={'themes': [{'name': 'Overwhelming fear and isolation at initial chronic fatigue onset', 'description': 'Participants describe the early stages of chronic fatigue as a scary and confusing experience, feeling a bit fluy, strange, and scared. They face emotional challenges, grief and uncertainty as symptoms emerge without clear diagnosis, compounded by isolation from friends and the university environment. The loss of normal activities and social contact leads to a tough, lonely time where only family remains as support.', 'code_slugs': ['scary-and-confusing-early-illness-experience', 'feeling-isolated-due-to-illness']}, {'name': 'Struggling with misdiagnosis and longing for real understanding', 'description': 'Participants recount early experiences of medical dismissal, such as doctors attributing symptoms solely to depression. They recognize the emotional impact but feel there is more going on physically. This misunderstanding leads to frustration and a strong desire to find real explanations and effective healing approaches beyond conventional medicine.', 'code_slugs': ['rejection-of-depression-diagnosis-and-emotional-awareness']}, {'name': 'Clinging to hope through meditation and fragmented relief efforts', 'description': 'Engaging in meditation, yoga, breath work, and guided relaxation offers participants temporary relief and moments of feeling better, providing hope that some control over their health is possible. Yet, these benefits are often short-lived and unstable, requiring ongoing effort to find deeper shifts in recovery.', 'code_slugs': ['hope-from-meditation-and-yoga-practices']}, {'name': 'Desperation spurs trying diverse alternative therapies seeking cure', 'description': 'Out of urgency to recover, participants try multiple alternative therapies such as acupuncture, reiki, nutrition therapy, and even colon hydrotherapy, often with mixed or limited success. This represents a willingness to explore all possible avenues despite invasiveness or skepticism, driven by a deep yearning to reclaim health.', 'code_slugs': ['desperation-leads-to-trying-various-alternative-therapies']}, {'name': 'Uncovering and releasing suppressed anger and old trauma for healing', 'description': 'Participants identify profound suppression of anger and unresolved trauma as pivotal barriers to recovery. Recognizing patterns of avoiding conflict and holding unexpressed emotions leads to emotional breakthroughs. This process helps participants address the mind-body connection and understand physical symptoms as manifestations of trauma responses, enhancing self-awareness and healing potential.', 'code_slugs': ['realization-of-suppressed-anger-and-unresolved-trauma', 'mind-body-connection-and-trauma-understanding']}, {'name': 'Learning to communicate authentically while setting healthy boundaries', 'description': 'Recovery journeys involve participants learning how to be authentic in expressing their feelings and needs without fearing upsetting others. Non-violent communication and boundary-setting skills help them balance self-care and relationships, moving from suppression to gentle assertiveness and honoring personal needs.', 'code_slugs': ['learning-authentic-self-expression-and-setting-boundaries']}, {'name': 'Integrating profound spiritual awakenings and meditation challenges', 'description': "Spiritual experiences such as kundalini awakening, mystical meditation, and out-of-body sensations play a significant but destabilizing role in participants' recovery. While these moments connect them deeply to the universe and provide meaningful insights, they sometimes interfere with daily functioning, necessitating a balance between spiritual growth and practical life demands.", 'code_slugs': ['spiritual-experience-as-part-of-healing-journey']}, {'name': 'Sustained self-care and emotional regulation beyond recovery', 'description': 'Even years after initial healing, participants continue to manage emotional, trauma-related, or dissociative symptoms through therapeutic work, nature exposure, and self-regulation techniques. This ongoing effort ensures balance and well-being remains, reflecting an enduring commitment to health maintenance and vigilance against relapse.', 'code_slugs': ['ongoing-self-care-and-regulation-post-recovery']}, {'name': 'Healing journey inspires career change into coaching and therapy work', 'description': "The prolonged recovery experience deeply influences participants' career paths, leading them to pursue therapeutic coaching, bodywork, and modalities like internal family systems. They integrate personal healing insights professionally, remaining lifelong learners who apply supportive practices to help others on their health journeys.", 'code_slugs': ['career-shift-driven-by-healing-experience']}, {'name': 'Recognizing ancestral trauma’s influence on illness and healing paths', 'description': 'Participants acknowledge the impact of ancestral and family lineage trauma on chronic fatigue development and recovery. They observe that illness can be rooted in wider family systems rather than just personal history, gaining awareness of generational health patterns and employing family constellation approaches to understand systemic illness dynamics.', 'code_slugs': ['recognizing-familial-and-ancestral-trauma-impact-on-health']}]} completion={'id': 'chatcmpl-COIsyIgeApKiSbN14aEIham6NNyAP', 'created': 1759908504, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"themes":[{"name":"Overwhelming fear and isolation at initial chronic fatigue onset","description":"Participants describe the early stages of chronic fatigue as a scary and confusing experience, feeling a bit fluy, strange, and scared. They face emotional challenges, grief and uncertainty as symptoms emerge without clear diagnosis, compounded by isolation from friends and the university environment. The loss of normal activities and social contact leads to a tough, lonely time where only family remains as support.","code_slugs":["scary-and-confusing-early-illness-experience","feeling-isolated-due-to-illness"]},{"name":"Struggling with misdiagnosis and longing for real understanding","description":"Participants recount early experiences of medical dismissal, such as doctors attributing symptoms solely to depression. They recognize the emotional impact but feel there is more going on physically. This misunderstanding leads to frustration and a strong desire to find real explanations and effective healing approaches beyond conventional medicine.","code_slugs":["rejection-of-depression-diagnosis-and-emotional-awareness"]},{"name":"Clinging to hope through meditation and fragmented relief efforts","description":"Engaging in meditation, yoga, breath work, and guided relaxation offers participants temporary relief and moments of feeling better, providing hope that some control over their health is possible. Yet, these benefits are often short-lived and unstable, requiring ongoing effort to find deeper shifts in recovery.","code_slugs":["hope-from-meditation-and-yoga-practices"]},{"name":"Desperation spurs trying diverse alternative therapies seeking cure","description":"Out of urgency to recover, participants try multiple alternative therapies such as acupuncture, reiki, nutrition therapy, and even colon hydrotherapy, often with mixed or limited success. This represents a willingness to explore all possible avenues despite invasiveness or skepticism, driven by a deep yearning to reclaim health.","code_slugs":["desperation-leads-to-trying-various-alternative-therapies"]},{"name":"Uncovering and releasing suppressed anger and old trauma for healing","description":"Participants identify profound suppression of anger and unresolved trauma as pivotal barriers to recovery. Recognizing patterns of avoiding conflict and holding unexpressed emotions leads to emotional breakthroughs. This process helps participants address the mind-body connection and understand physical symptoms as manifestations of trauma responses, enhancing self-awareness and healing potential.","code_slugs":["realization-of-suppressed-anger-and-unresolved-trauma","mind-body-connection-and-trauma-understanding"]},{"name":"Learning to communicate authentically while setting healthy boundaries","description":"Recovery journeys involve participants learning how to be authentic in expressing their feelings and needs without fearing upsetting others. Non-violent communication and boundary-setting skills help them balance self-care and relationships, moving from suppression to gentle assertiveness and honoring personal needs.","code_slugs":["learning-authentic-self-expression-and-setting-boundaries"]},{"name":"Integrating profound spiritual awakenings and meditation challenges","description":"Spiritual experiences such as kundalini awakening, mystical meditation, and out-of-body sensations play a significant but destabilizing role in participants\' recovery. While these moments connect them deeply to the universe and provide meaningful insights, they sometimes interfere with daily functioning, necessitating a balance between spiritual growth and practical life demands.","code_slugs":["spiritual-experience-as-part-of-healing-journey"]},{"name":"Sustained self-care and emotional regulation beyond recovery","description":"Even years after initial healing, participants continue to manage emotional, trauma-related, or dissociative symptoms through therapeutic work, nature exposure, and self-regulation techniques. 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| item_4 | item_4 | 4 | You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n</text>\nAlways use the tools/JSON response.\n\n```json | {'themes': [{'name': 'Overwhelming fear and devastation from ME/CFS diagnosis and limited medical support', 'description': "After the participant's diagnosis of chronic fatigue syndrome, they felt terrified and devastated, describing it as a death or life sentence with no known cure. 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This theme highlights how unresolved trauma and ongoing psychological stress maintained neurological hypervigilance, perpetuating symptoms through the brain and nervous system's stress responses despite absence of identifiable physical damage.', 'code_slugs': ['trauma-led-health-crisis', 'brain-based-explanation-for-fatigue-symptoms']}, {'name': 'Finding mental peace and spiritual connection to endure symptoms and support recovery', 'description': 'Despite persistent severe symptoms, the participant attained states of mental peace and nonresistance through meditation, yoga, and spiritual practices. This deep inner calmness and connection to something greater enabled the participant to observe symptoms without emotional turmoil, serving as a vital coping mechanism and foundation for emotional healing over their long recovery journey.', 'code_slugs': ['mental-peace-despite-physical-symptoms']}, {'name': 'Healing through emotional processing, self-compassion, and releasing bottled emotions', 'description': 'Addressing emotional grief, trauma, and suppressed anger through psychotherapy, journaling, and self-compassion was crucial to the participant’s recovery. Embracing kindness toward oneself softened the blow of symptoms and reduced self-criticism that activated the brain’s danger signals. Expressive writing and emotional release helped alleviate the pressure cooker effect of holding in feelings, allowing nervous system recalibration.', 'code_slugs': ['self-compassion-supporting-recovery', 'importance-of-emotional-processing', 'impact-of-personality-on-symptom-perpetuation']}, {'name': 'Validation and hope from empathetic connection and new understanding of illness', 'description': 'A pivotal experience was a long conversation with someone who truly understood the illness and explained the brain and nervous system’s role in perpetuating symptoms. This validation from empathetic connection sparked a spontaneous remission and instilled a profound belief in the possibility of recovery. It shifted the participant’s perspective from helplessness to hopeful empowerment by conveying that recovery is possible through calming the nervous system.', 'code_slugs': ['validation-and-hope-from-connection']}]} | [(type, chatter), (results, {'codes': prompt="You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n</text>\nAlways use the tools/JSON response.\n\n```json" output={'codes': [{'slug': 'trauma-led-health-crisis', 'name': 'Trauma leading to sudden health crisis and exhaustion', 'description': 'Participant describes a traumatic sexual assault and subsequent intense physical illness (urinary tract infection during long flight) that triggered sudden, severe exhaustion and ME/CFS symptoms such as insomnia, brain fog, and digestive issues lasting for years.', 'quotes': ["i was sexually assaulted and that led to a really grueling urinary tract infection... whole system just kind of blacked out... i just went totally kaput i felt like i had the flu twenty four seven... i felt like i couldn't remember the name of... digestive issues... hot flashes and pre menopausal symptoms even though i was so young"]}, {'slug': 'fear-and-uncertainty-after-diagnosis', 'name': 'Fear and uncertainty following chronic fatigue syndrome diagnosis', 'description': 'Upon receiving the chronic fatigue syndrome diagnosis, the participant experienced a mix of relief for having an explanation and devastating fear, likening the prognosis to a death or life sentence with no cure and ongoing suffering.', 'quotes': ['you know i was so scared... i remember bawling... it was such a death sentence but in a way a life sentence that i was given that i would have to live with for years', "on the one hand i was relieved to have a diagnosis... on the other hand it was really devastating... a natural path doctor said there's no cure"]}, {'slug': 'resentment-towards-prescribed-diets', 'name': 'Resentment towards restrictive diets imposed in treatment', 'description': 'The participant describes feeling misery and resentment towards elimination diets (gluten-free, sugar-free, dairy-free) and restrictions imposed by medical and natural health practitioners that were not collaboratively chosen and felt imposed rather than empowering.', 'quotes': ["it was like not only are you totally miserable but we're going to take away anything you enjoy eating", "i felt like it was being done to me... actually he said you know what i think that's perpetuating the trauma", "there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing"]}, {'slug': 'regaining-agency-in-healing', 'name': 'Regaining personal agency and control in healing journey', 'description': 'Participant highlights the importance of reclaiming personal power and actively collaborating in their healing process, as opposed to passively following medical instructions, which increased resentment and hindered healing progress.', 'quotes': ['at some point i have to regain my agency and my power and my collaboration in my healing', 'i started realizing with diet and everything else... otherwise i was resenting it', "someone sees me and i didn't even know that's how i felt"]}, {'slug': 'mental-peace-despite-physical-symptoms', 'name': 'Experiencing mental peace while symptoms persist', 'description': 'Despite ongoing severe physical symptoms, participant describes achieving a mental state of peace and nonresistance through meditation and spiritual connection, observing symptoms without emotional struggle, which aided emotional coping and eventual recovery progress.', 'quotes': ["there was this internal state of nonresistance or peace... and it really wasn't something i tried to do... it just kind of happened", 'i was kind of watching the symptoms but felt peace', 'i really started meditating and practicing yoga and that sense of spiritual connection really helped']}, {'slug': 'brain-based-explanation-for-fatigue-symptoms', 'name': 'Adopting brain and nervous system explanation for ME/CFS symptoms', 'description': "Learning that symptoms are perpetuated by brain and nervous system's stress response and not directly by viruses or physical damage gave participant hope and understanding, shifting from feeling helpless to empowered to calm the nervous system.", 'quotes': ['she explained all these viruses were suppressing the immune system... but it was how her brain and nervous system were processing stress', "she said 'you're not sick, you're stressed, your system is stuck in this pattern'", 'the brain generates pain... fatigue because it senses danger... danger can be psychological as well as physical']}, {'slug': 'self-compassion-supporting-recovery', 'name': 'Cultivating self-compassion to manage symptoms and aid recovery', 'description': 'Participant emphasizes that adopting self-compassion and kindness toward oneself reduces self-criticism that otherwise triggers stress and perpetuates symptoms, enabling more effective emotional regulation and eventual physical improvement.', 'quotes': ['self criticism actually does activate the danger alarm in the brain... so it can feed into symptoms', "i just talk to myself in a compassionate way... i'm so sorry... what do you want or need right now", 'to realize having compassion on ourselves is helpful and can soften the blow']}, {'slug': 'impact-of-personality-on-symptom-perpetuation', 'name': 'Role of personality traits like perfectionism in illness experience', 'description': 'Perfectionism, people-pleasing, conscientiousness and holding in emotions were discussed as personality traits common in those with ME/CFS, contributing to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.', 'quotes': ['perfectionist check, people pleasers check... really conscientious, hard driving', "holding the emotions... it's kind of like a pressure cooker", 'people who get cfs are really nice people but they hold in emotions']}, {'slug': 'importance-of-emotional-processing', 'name': 'Acknowledging and processing emotions as key to recovery', 'description': 'Participant shares therapeutic practices like journaling and psychotherapy that helped them express anger, grief, and trauma, releasing emotional pressure that contributed to nervous system hypervigilance and symptom worsening.', 'quotes': ['some psychotherapy was helpful... talk through griefs', 'i did some journaling... just to get out frustration i was too nice to say to anyone', 'journaling your anger... bottled up anger can be very harmful']}, {'slug': 'validation-and-hope-from-connection', 'name': 'Finding validation and hope through empathetic connection', 'description': 'Talking with someone who truly understood the illness experience and explained the brain-based mechanism provided a critical moment of validation and hope, leading to a spontaneous increase in energy and belief in recovery.', 'quotes': ['she cared a lot... spent three hours on the phone with me', 'i felt like i finally heard the truth... it gave me hope', 'after that conversation i got up and ran around the block like i had not ran in thirteen years']}]} completion={'id': 'chatcmpl-COIs4vM2KM3WlK11ijdTHWVfse7b9', 'created': 1759908448, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"codes":[{"slug":"trauma-led-health-crisis","name":"Trauma leading to sudden health crisis and exhaustion","description":"Participant describes a traumatic sexual assault and subsequent intense physical illness (urinary tract infection during long flight) that triggered sudden, severe exhaustion and ME/CFS symptoms such as insomnia, brain fog, and digestive issues lasting for years.","quotes":["i was sexually assaulted and that led to a really grueling urinary tract infection... whole system just kind of blacked out... i just went totally kaput i felt like i had the flu twenty four seven... i felt like i 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independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \'code\' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\'s in san diego so we\'re both in california which made scheduling this incredibly easy so grateful that she\'s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\'s got a lot of really great stuff to share so i\'m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\'s such a pleasure ray lynn i\'ve watched your channel recently and i\'m just so touched by the heart you put into it it\'s really clear that you\'re just here to support people and just offer all the different ways that helped you and helped others recover so i\'m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\'s really it\'s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\'s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\'t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\'t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\'t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\'t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\'s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\'m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\'t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\'t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\'t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\'t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\'s you know he\'s natural he\'s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\'t know what the causes and we there is no cure and really you\'re going to have to live with this i mean that\'s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\'t think so i mean it wasn\'t something that i didn\'t know anyone that had c f s maybe distantly i had heard of it but i really didn\'t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\'re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\'t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\'t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\'t even eating you know carrots or any grains or anything like that which really wasn\'t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\'t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\'t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\'s every kind of sleep expert and that was still a really vexing symptom when i wouldn\'t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\'t he couldn\'t really understand why i couldn\'t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\'t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\'re hit with i\'m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\'re just sort of this body that is trying to get better but at times i fell into some depression i\'m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\'s the point of living at all i mean on doing is taking these supplements like eating foods i don\'t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\'t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\'t have a cure there was something in me that was like but this isn\'t me like this isn\'t my life this is not how it\'s going to go i know that there\'s something that can get well there\'s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\'m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\'re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\'t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\'t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\'t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\'m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\'s actually perpetuating the trauma in which you felt you were in control of your body and now you\'re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\'t even know that\'s how i felt but i think for those of us even if there isn\'t a trauma what i find with other people i meet who have c f s is often if not always there\'s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\'t work partly because of that and partly because the root cause of my c f s was not that i wasn\'t eating enough kale right that wasn\'t the cause or that i wasn\'t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\'t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\'t have gluten i can\'t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\'t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\'s what i found too and so i think especially if you\'re being asked to eat in a way that just doesn\'t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\'s going to be resentment you\'re right you\'re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\'s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\'t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\'t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\'t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\'t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\'ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\'t think we should talk about this let\'s talk about my cat which i\'m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\'m thinking this woman who\'s not even listening to me who\'s shutting me down is going to heal me and it\'s just not going to happen not to say i didn\'t think i needed help from people or that we don\'t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\'s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\'s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\'t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\'t actually shift the physical symptoms but i sort of was it\'s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\'t fighting it and so i feel like from that place i really wasn\'t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\'t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\'t want people to think oh that doesn\'t happen to me it can\'t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\'t overcome and so to me i felt like that\'s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\'re not sick you know and i think she kind of alluded you\'re just you\'re stressed you\'ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\'t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\'s a really good point because i think for me what the key was even though this woman wasn\'t a therapist she wasn\'t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\'s not a medical professional but i felt like i can overcome this because it\'s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\'m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\'t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\'s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\'re talking about food and for years i couldn\'t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\'s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\'m fine and i just assumed okay my body must have healed it but now i\'m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\'m ok a little bit i\'m okay brought up and socialized not to attribute attribute our physical symptoms to something that\'s being caused by the brain like we don\'t even see the connection at all like there\'s a wall here where this stuff starts where this stuff starts and it\'s just exactly to see that that\'s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\'s so interesting we\'re raised like you say to see like a physical symptom has to have a physical cause but now there\'s actually a whole body of neuroscience and scientific research showing that there\'s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\'s the same part of the brain that perceives it and so what\'s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\'s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\'ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\'t like particularly discriminating they\'re just sort of picking up information in our environment and if we\'re stressed or in our nervous system hypervigilant they can mistake that like rice isn\'t good for me or whatever we\'re told by our doctors isn\'t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\'s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\'m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\'re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\'t an innate food allergy it\'s an association or a condition response it\'s like pavlov\'s dog right it\'s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\'s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\'s not that it doesn\'t exist you know our brain is a very real part of our body it\'s another organ that we have so it is creating conditions in our body it is something that is real it\'s just not maybe caused by the organ that we think is causing it it\'s originating from a different place in the body\n\nSPEAKER_00: yeah i\'m so glad you said that because i know like all of us who have dealt with cfs we\'ve been told like you\'re making this up or we\'ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\'ve mentioned dr sarno and dr schubiner whose work really helped me they\'re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\'ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\'re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\'s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\'m sure was higher because my brain and nervous system weren\'t functioning optimally and so when you\'re prepared to run or fight your digestion is not a priority your hormones aren\'t a priority all these other things are not working as well that\'s true the immune system isn\'t a priority but what i found for me is that wasn\'t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\'m being told i\'m just emotional or depressed it\'s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\'re safe or not safe whether to trigger the flight fight freeze response right if there\'s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\'t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\'s like where\'s the heart and the humanity much less the neuroscience and i don\'t mean to blame or implicate i know everybody\'s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\'s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\'t serious and i just i don\'t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\'m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\'s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\'s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\'t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\'m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\'s the same thing because if you think of fatigue there\'s a part of you that doesn\'t feel safe and it\'s sort of like your system\'s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\'re not aware of them but i think that for me there was this perception like the world\'s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\'re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\'t done the curable app because i already recovered through some of the other books and through coaching but it\'s it\'s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\'m really glad curable i\'m told by some of my clients now has somatic tracking meditations on there but basically you don\'t even need a meditation but it\'s helpful to be guided where you\'re just kind of tracking sensations in your body so it\'s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\'re getting these messages of safety like i\'m safe and ok there\'s actually nothing wrong with my body so you\'re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\'s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\'s different podcasts on this approach curable has one there\'s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\'m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\'m doing it the symptoms are rising i\'m getting that malaise and i would just be like reiterate like you know i\'m ok i got this i i know what\'s going on and that\'s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\'t take a lot of time this approach it\'s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\'s not good for you but then within usually a few times i could just eat it ok it\'s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\'ll say i was really ready i would have been able to just jump into this years before when for one i didn\'t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\'s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\'s like how am i feeling emotionally and i would acknowledge i\'m scared i\'m really scared i\'m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\'s really hard you know just talk to myself i\'m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\'s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\'s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\'m failing what\'s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\'ll pick it back up when when it\'s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\'s books and there\'s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\'re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\'re and also and not just that with myself with a lot of people i meet it\'s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\'re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\'s boiling with the lid on eventually it\'s going to burst because we\'re holding in all the pressures i remember i know i keep bringing him up but he\'s such a kind man and i think he\'s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\'re really nice people like i get to work with the nicest people right because it\'s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\'ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\'t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\'m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\'t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\'ll notice if i\'m pushing too hard like if i\'m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\'m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\'m aware of it usually the symptoms subside or sometimes i\'ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\'t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\'t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\'s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\'t just unkind to myself like it\'s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\'re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\'re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\'s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\'s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\'m not angry i don\'t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\'re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\'s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\'s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\'s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\'m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\'re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\'m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\'m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\'s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\'s been wow three years now feel really grateful i\'m at this point where i know there\'s so many years where it\'s i would never want to go through it again honestly and i wouldn\'t want anyone to have to it\'s so hard but i am at this point where it\'s like i\'m grateful for the ways i\'ve grown that i don\'t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\'s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\'s at some point that\'s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\'ve interviewed recovered something similar they\'re just a better place than they were before and they\'ve learned so much such a weird thing like i used to my own journey i\'m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\'s just such a crazy thing to think i don\'t think i would just mind blowing and i\'m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\'s like a really form of going to the acceptance and healing to get to that point where it\'s like how i would take it away i\'m grateful for what i\'ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\'s a lot of things we don\'t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\'t their fault because i was also kind of giving them that power but realize like wow there\'s so much resilience inside and for me i\'ve learned nothing\'s going to work unless i intuitively feel right about it like if i\'m doing something as a means to an end whether it\'s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\'t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\'m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\'s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\'d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\'s a quality stabilize i think now things for me like maybe there\'s a little less of being able to do things but there\'s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\'t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\'m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\'s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\'s a good it\'s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\'s fully behind me it\'s really amazing because i know for so many of us for all those years if you like you\'re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\'ve ever done by far it really is amazing sometimes you kind of question it but i think that\'s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\'s got like such certainty that\'s that\'s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\'s all kind of in stages right yeah it\'s all stages and then you get to the point where you feel it\'s behind you and you\'ve recovered but yet you have all these things you\'ve learned and that you still integrate\n\nSPEAKER_01: it\'s a good place to be and that\'s why i just did that video because i didn\'t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\'s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\'m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\'s so two hundred and forty seven now and it\'s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\'s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\'s just when there\'s things that don\'t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\'s been really fun to be kind of in community with people so that\'s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\'s like ok either need to get another job because i\'m off disability or really make this my vocation i just decided i wanted to do this full time so it\'s been interesting growing my own business but it\'s really it\'s from my heart and i really love it it\'s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\'s just incredible i don\'t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\'s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\'s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\'m just so grateful for you and the work that you do and that you\'re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\'m so grateful to you honestly i\'m so touched by looking at how much you give out how much you put out to do this just to support the community it\'s clear that your heart is so in it and you just really want to help people and i know that you\'re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\'s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\'s just this is just\n\nSPEAKER_01: the most selfish thing i\'ve ever done because i get so much out of it it\'s really rewarding so it\'s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\'s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\'s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\'re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\'s really the best way i\'m also on facebook but i\'m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\'ll find all of that there i highly encourage you to check it out and rebecca you\'ve mentioned a lot of really great resources and books and so forth so we\'ll make sure to have a full list of all of those things linked below as well so if you\'re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\'ve got a whole playlist of full recovery stories just like this one i\'ll link it up here it\'s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\'m just so grateful to people like yourself i\'m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\'s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\'re going through it\'s just it\'s so moving so i\'m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\'s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\'re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\'re a superstar\n\nSPEAKER_01: that\'s it for today thanks for watching and i\'ll see you in the next video\n</text>\n\n--\n\ncodes=[Code(slug=\'trauma-led-health-crisis\', name=\'Trauma leading to sudden health crisis and exhaustion\', description=\'Participant describes a traumatic sexual assault and subsequent intense physical illness (urinary tract infection during long flight) that triggered sudden, severe exhaustion and ME/CFS symptoms such as insomnia, brain fog, and digestive issues lasting for years.\', quotes=["i was sexually assaulted and that led to a really grueling urinary tract infection... whole system just kind of blacked out... i just went totally kaput i felt like i had the flu twenty four seven... i felt like i couldn\'t remember the name of... digestive issues... hot flashes and pre menopausal symptoms even though i was so young"]), Code(slug=\'fear-and-uncertainty-after-diagnosis\', name=\'Fear and uncertainty following chronic fatigue syndrome diagnosis\', description=\'Upon receiving the chronic fatigue syndrome diagnosis, the participant experienced a mix of relief for having an explanation and devastating fear, likening the prognosis to a death or life sentence with no cure and ongoing suffering.\', quotes=[\'you know i was so scared... i remember bawling... it was such a death sentence but in a way a life sentence that i was given that i would have to live with for years\', "on the one hand i was relieved to have a diagnosis... on the other hand it was really devastating... a natural path doctor said there\'s no cure"]), Code(slug=\'resentment-towards-prescribed-diets\', name=\'Resentment towards restrictive diets imposed in treatment\', description=\'The participant describes feeling misery and resentment towards elimination diets (gluten-free, sugar-free, dairy-free) and restrictions imposed by medical and natural health practitioners that were not collaboratively chosen and felt imposed rather than empowering.\', quotes=["it was like not only are you totally miserable but we\'re going to take away anything you enjoy eating", "i felt like it was being done to me... actually he said you know what i think that\'s perpetuating the trauma", "there was a part of me that really resented it because i didn\'t feel like i was an active participant at that point in my own healing"]), Code(slug=\'regaining-agency-in-healing\', name=\'Regaining personal agency and control in healing journey\', description=\'Participant highlights the importance of reclaiming personal power and actively collaborating in their healing process, as opposed to passively following medical instructions, which increased resentment and hindered healing progress.\', quotes=[\'at some point i have to regain my agency and my power and my collaboration in my healing\', \'i started realizing with diet and everything else... otherwise i was resenting it\', "someone sees me and i didn\'t even know that\'s how i felt"]), Code(slug=\'mental-peace-despite-physical-symptoms\', name=\'Experiencing mental peace while symptoms persist\', description=\'Despite ongoing severe physical symptoms, participant describes achieving a mental state of peace and nonresistance through meditation and spiritual connection, observing symptoms without emotional struggle, which aided emotional coping and eventual recovery progress.\', quotes=["there was this internal state of nonresistance or peace... and it really wasn\'t something i tried to do... it just kind of happened", \'i was kind of watching the symptoms but felt peace\', \'i really started meditating and practicing yoga and that sense of spiritual connection really helped\']), Code(slug=\'brain-based-explanation-for-fatigue-symptoms\', name=\'Adopting brain and nervous system explanation for ME/CFS symptoms\', description="Learning that symptoms are perpetuated by brain and nervous system\'s stress response and not directly by viruses or physical damage gave participant hope and understanding, shifting from feeling helpless to empowered to calm the nervous system.", quotes=[\'she explained all these viruses were suppressing the immune system... but it was how her brain and nervous system were processing stress\', "she said \'you\'re not sick, you\'re stressed, your system is stuck in this pattern\'", \'the brain generates pain... fatigue because it senses danger... danger can be psychological as well as physical\']), Code(slug=\'self-compassion-supporting-recovery\', name=\'Cultivating self-compassion to manage symptoms and aid recovery\', description=\'Participant emphasizes that adopting self-compassion and kindness toward oneself reduces self-criticism that otherwise triggers stress and perpetuates symptoms, enabling more effective emotional regulation and eventual physical improvement.\', quotes=[\'self criticism actually does activate the danger alarm in the brain... so it can feed into symptoms\', "i just talk to myself in a compassionate way... i\'m so sorry... what do you want or need right now", \'to realize having compassion on ourselves is helpful and can soften the blow\']), Code(slug=\'impact-of-personality-on-symptom-perpetuation\', name=\'Role of personality traits like perfectionism in illness experience\', description=\'Perfectionism, people-pleasing, conscientiousness and holding in emotions were discussed as personality traits common in those with ME/CFS, contributing to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.\', quotes=[\'perfectionist check, people pleasers check... really conscientious, hard driving\', "holding the emotions... it\'s kind of like a pressure cooker", \'people who get cfs are really nice people but they hold in emotions\']), Code(slug=\'importance-of-emotional-processing\', name=\'Acknowledging and processing emotions as key to recovery\', description=\'Participant shares therapeutic practices like journaling and psychotherapy that helped them express anger, grief, and trauma, releasing emotional pressure that contributed to nervous system hypervigilance and symptom worsening.\', quotes=[\'some psychotherapy was helpful... talk through griefs\', \'i did some journaling... just to get out frustration i was too nice to say to anyone\', \'journaling your anger... bottled up anger can be very harmful\']), Code(slug=\'validation-and-hope-from-connection\', name=\'Finding validation and hope through empathetic connection\', description=\'Talking with someone who truly understood the illness experience and explained the brain-based mechanism provided a critical moment of validation and hope, leading to a spontaneous increase in energy and belief in recovery.\', quotes=[\'she cared a lot... spent three hours on the phone with me\', \'i felt like i finally heard the truth... it gave me hope\', \'after that conversation i got up and ran around the block like i had not ran in thirteen years\'])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \'theme\' is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \'share\' codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\'s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clichés, generalizations. Avoid the word \'Navigating\' in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json' output={'themes': [{'name': 'Overwhelming fear and devastation from ME/CFS diagnosis and limited medical support', 'description': "After the participant's diagnosis of chronic fatigue syndrome, they felt terrified and devastated, describing it as a death or life sentence with no known cure. The participant recalls bawling and feeling hopeless when doctors confirmed no cure and a need to live with symptoms, leading to a profound emotional struggle and sense of lost future, despite relief at having a diagnosis to explain their decline.", 'code_slugs': ['fear-and-uncertainty-after-diagnosis']}, {'name': 'Frustration and resentment from imposed restrictive diets and treatments lacking personal control', 'description': 'The participant experienced misery and resentment towards strict elimination diets and numerous supplements that were recommended by doctors and natural health practitioners without their input. Feeling like these interventions were being done to them rather than with them, the participant felt these measures perpetuated trauma and hindered healing because they lacked agency and were not tailored to their needs or preferences.', 'code_slugs': ['resentment-towards-prescribed-diets', 'regaining-agency-in-healing']}, {'name': 'Physical symptoms triggered by trauma and sustained by nervous system hypervigilance and emotional stress', 'description': "The initial trigger for the participant's illness was a traumatic sexual assault followed by infection and physical collapse, causing classic ME/CFS symptoms including 24/7 flu-like exhaustion, insomnia, brain fog, and digestive issues. This theme highlights how unresolved trauma and ongoing psychological stress maintained neurological hypervigilance, perpetuating symptoms through the brain and nervous system's stress responses despite absence of identifiable physical damage.", 'code_slugs': ['trauma-led-health-crisis', 'brain-based-explanation-for-fatigue-symptoms']}, {'name': 'Finding mental peace and spiritual connection to endure symptoms and support recovery', 'description': 'Despite persistent severe symptoms, the participant attained states of mental peace and nonresistance through meditation, yoga, and spiritual practices. This deep inner calmness and connection to something greater enabled the participant to observe symptoms without emotional turmoil, serving as a vital coping mechanism and foundation for emotional healing over their long recovery journey.', 'code_slugs': ['mental-peace-despite-physical-symptoms']}, {'name': 'Healing through emotional processing, self-compassion, and releasing bottled emotions', 'description': 'Addressing emotional grief, trauma, and suppressed anger through psychotherapy, journaling, and self-compassion was crucial to the participant’s recovery. Embracing kindness toward oneself softened the blow of symptoms and reduced self-criticism that activated the brain’s danger signals. Expressive writing and emotional release helped alleviate the pressure cooker effect of holding in feelings, allowing nervous system recalibration.', 'code_slugs': ['self-compassion-supporting-recovery', 'importance-of-emotional-processing', 'impact-of-personality-on-symptom-perpetuation']}, {'name': 'Validation and hope from empathetic connection and new understanding of illness', 'description': 'A pivotal experience was a long conversation with someone who truly understood the illness and explained the brain and nervous system’s role in perpetuating symptoms. This validation from empathetic connection sparked a spontaneous remission and instilled a profound belief in the possibility of recovery. It shifted the participant’s perspective from helplessness to hopeful empowerment by conveying that recovery is possible through calming the nervous system.', 'code_slugs': ['validation-and-hope-from-connection']}]} completion={'id': 'chatcmpl-COIsyWIGn6re72qhNZvvccOdQlIsj', 'created': 1759908504, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"themes":[{"name":"Overwhelming fear and devastation from ME/CFS diagnosis and limited medical support","description":"After the participant\'s diagnosis of chronic fatigue syndrome, they felt terrified and devastated, describing it as a death or life sentence with no known cure. The participant recalls bawling and feeling hopeless when doctors confirmed no cure and a need to live with symptoms, leading to a profound emotional struggle and sense of lost future, despite relief at having a diagnosis to explain their decline.","code_slugs":["fear-and-uncertainty-after-diagnosis"]},{"name":"Frustration and resentment from imposed restrictive diets and treatments lacking personal control","description":"The participant experienced misery and resentment towards strict elimination diets and numerous supplements that were recommended by doctors and natural health practitioners without their input. Feeling like these interventions were being done to them rather than with them, the participant felt these measures perpetuated trauma and hindered healing because they lacked agency and were not tailored to their needs or preferences.","code_slugs":["resentment-towards-prescribed-diets","regaining-agency-in-healing"]},{"name":"Physical symptoms triggered by trauma and sustained by nervous system hypervigilance and emotional stress","description":"The initial trigger for the participant\'s illness was a traumatic sexual assault followed by infection and physical collapse, causing classic ME/CFS symptoms including 24/7 flu-like exhaustion, insomnia, brain fog, and digestive issues. This theme highlights how unresolved trauma and ongoing psychological stress maintained neurological hypervigilance, perpetuating symptoms through the brain and nervous system\'s stress responses despite absence of identifiable physical damage.","code_slugs":["trauma-led-health-crisis","brain-based-explanation-for-fatigue-symptoms"]},{"name":"Finding mental peace and spiritual connection to endure symptoms and support recovery","description":"Despite persistent severe symptoms, the participant attained states of mental peace and nonresistance through meditation, yoga, and spiritual practices. 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It shifted the participant’s perspective from helplessness to hopeful empowerment by conveying that recovery is possible through calming the nervous system.","code_slugs":["validation-and-hope-from-connection"]}]}', 'name': 'Themes'}, 'id': 'call_6a09sibOGLCkVR22dxRp0LOP', 'type': 'function'}], 'function_call': None, 'annotations': []}, 'provider_specific_fields': {}}], 'usage': {'completion_tokens': 672, 'prompt_tokens': 14457, 'total_tokens': 15129, 'completion_tokens_details': {'accepted_prediction_tokens': None, 'audio_tokens': 0, 'reasoning_tokens': 0, 'rejected_prediction_tokens': None}, 'prompt_tokens_details': {'audio_tokens': 0, 'cached_tokens': 0}}, 'service_tier': None, 'prompt_filter_results': [{'prompt_index': 0, 'content_filter_results': {'hate': {'filtered': False, 'severity': 'safe'}, 'jailbreak': {'filtered': False, 'detected': False}, 'self_harm': {'filtered': False, 'severity': 'safe'}, 'sexual': {'filtered': False, 'severity': 'safe'}, 'violence': {'filtered': False, 'severity': 'safe'}}}]}})] |
| item_5 | item_5 | 5 | You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i've learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today's interview is an example of just that hi everyone i'm ralan if you're new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i'm super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let's dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn't have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn't have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i've had jason on the channel before that's jason mctiernan's program correct i can thrive yeah i've interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he's a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you're going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i'm by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we're in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you're even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i'm training for a full marathon with some of my friends and before i don't think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it's a horrible thing to go through but thankfully there's a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn't realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that's more of a journey rather than oh i'm stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it's meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you're going through the program if someone's watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you'll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there's online videos that he'll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you're doing great and it's just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he'd give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program's working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there's still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i'm still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that's a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we're going to keep going to keep having symptoms and different things in our lives to let us know what's going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i've got the tools i know what to do i can get past it yeah so for you have anything that you'd want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you'd say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you're feeling even if you haven't found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they're facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he'll always tell you that you got this and it's a journey so can't just keep comparing yourself to where you've been like you're on the right path to recovery\n\nSPEAKER_00: amazing well i'm so so happy for you kelly this is incredible i'm happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it's always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don't want people watching to feel discouraged if their recovery doesn't happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you're interested in learning more about jason mctiernan and his program i can thrive we'll put a video here to help you get a better sense of what that's all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n</text>\nAlways use the tools/JSON response.\n\n```json | {'themes': [{'name': 'Experiencing energy loss and frustration from inconclusive medical answers', 'description': 'Participant felt a noticeable drop in energy and motivation, describing how fatigue led to extended rest and physical symptoms like canker sores. Despite visiting doctors who confirmed their vitals and blood work as normal, the participant experienced frustration and doubt, exploring mental health as a possible cause, highlighting the emotional uncertainty accompanying unexplained symptoms.', 'code_slugs': ['energy-loss-and-fatigue-in-cfs-long-covid', 'frustration-of-inconclusive-medical-tests']}, {'name': 'Initial doubts and subsequent trust in brain retraining healing techniques', 'description': 'Participant was initially skeptical about hypnosis and brain retraining methods offered by the program but found commitment to these techniques effective for symptom relief and anxiety management. The journey from doubt to acceptance shows a shift in mindset, embracing unconventional healing that fundamentally changed their approach to recovery.', 'code_slugs': ['initial-skepticism-of-brain-retraining-technique']}, {'name': 'Building mental stamina and positive mindset for physical recovery challenges', 'description': 'The participant highlighted the importance of developing mental stamina and adopting positive affirmations, enabling progression from basic daily functioning to running 10K races and training for marathons. This growth mindset and empowerment were pivotal in sustaining motivation and embracing physical challenges beyond previous limits.', 'code_slugs': ['importance-of-mental-stamina-for-active-recovery']}, {'name': 'Finding motivation through personal encouragement and belief from support', 'description': 'Participant valued the personalized, encouraging support they received from their coach, which boosted motivation and belief in recovery despite ongoing challenges. Regular texts and genuine belief from someone invested, even as a stranger, made a meaningful difference in maintaining hope and progress.', 'code_slugs': ['valuing-supportive-encouragement-in-recovery']}, {'name': 'Adopting empowering self-talk to transform anxiety into recovery progress', 'description': "The participant discovered replacing disempowering anxiety statements with affirmations like 'I am on my way to getting better' fostered a positive, hopeful mindset. This shift transformed their experience of anxiety from feeling stuck to seeing it as a stage in an ongoing health journey, supporting emotional resilience.", 'code_slugs': ['developing-empowering-self-statements']}, {'name': 'Accepting recovery as a continuous journey with tools for setbacks', 'description': 'Participant recognized recovery as an ongoing journey rather than a fixed, fully cured state, understanding that life will bring stress and anxious moments. They emphasized having tools to manage symptoms and refocus, cultivating confidence to maintain progress and face fluctuations without fear or discouragement.', 'code_slugs': ['recognizing-the-journey-of-recovery-not-a-fix']}]} | {'themes': [{'name': 'Experiencing energy loss and frustration from inconclusive medical answers', 'description': 'Participant felt a noticeable drop in energy and motivation, describing how fatigue led to extended rest and physical symptoms like canker sores. 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The journey from doubt to acceptance shows a shift in mindset, embracing unconventional healing that fundamentally changed their approach to recovery.', 'code_slugs': ['initial-skepticism-of-brain-retraining-technique']}, {'name': 'Building mental stamina and positive mindset for physical recovery challenges', 'description': 'The participant highlighted the importance of developing mental stamina and adopting positive affirmations, enabling progression from basic daily functioning to running 10K races and training for marathons. This growth mindset and empowerment were pivotal in sustaining motivation and embracing physical challenges beyond previous limits.', 'code_slugs': ['importance-of-mental-stamina-for-active-recovery']}, {'name': 'Finding motivation through personal encouragement and belief from support', 'description': 'Participant valued the personalized, encouraging support they received from their coach, which boosted motivation and belief in recovery despite ongoing challenges. Regular texts and genuine belief from someone invested, even as a stranger, made a meaningful difference in maintaining hope and progress.', 'code_slugs': ['valuing-supportive-encouragement-in-recovery']}, {'name': 'Adopting empowering self-talk to transform anxiety into recovery progress', 'description': 'The participant discovered replacing disempowering anxiety statements with affirmations like 'I am on my way to getting better' fostered a positive, hopeful mindset. This shift transformed their experience of anxiety from feeling stuck to seeing it as a stage in an ongoing health journey, supporting emotional resilience.', 'code_slugs': ['developing-empowering-self-statements']}, {'name': 'Accepting recovery as a continuous journey with tools for setbacks', 'description': 'Participant recognized recovery as an ongoing journey rather than a fixed, fully cured state, understanding that life will bring stress and anxious moments. They emphasized having tools to manage symptoms and refocus, cultivating confidence to maintain progress and face fluctuations without fear or discouragement.', 'code_slugs': ['recognizing-the-journey-of-recovery-not-a-fix']}]} | [(type, chatter), (results, {'codes': prompt="You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i've learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today's interview is an example of just that hi everyone i'm ralan if you're new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i'm super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let's dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn't have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn't have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i've had jason on the channel before that's jason mctiernan's program correct i can thrive yeah i've interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he's a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you're going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i'm by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we're in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you're even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i'm training for a full marathon with some of my friends and before i don't think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it's a horrible thing to go through but thankfully there's a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn't realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that's more of a journey rather than oh i'm stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it's meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you're going through the program if someone's watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you'll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there's online videos that he'll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you're doing great and it's just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he'd give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program's working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there's still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i'm still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that's a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we're going to keep going to keep having symptoms and different things in our lives to let us know what's going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i've got the tools i know what to do i can get past it yeah so for you have anything that you'd want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you'd say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you're feeling even if you haven't found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they're facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he'll always tell you that you got this and it's a journey so can't just keep comparing yourself to where you've been like you're on the right path to recovery\n\nSPEAKER_00: amazing well i'm so so happy for you kelly this is incredible i'm happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it's always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don't want people watching to feel discouraged if their recovery doesn't happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you're interested in learning more about jason mctiernan and his program i can thrive we'll put a video here to help you get a better sense of what that's all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n</text>\nAlways use the tools/JSON response.\n\n```json" output={'codes': [{'slug': 'energy-loss-and-fatigue-in-cfs-long-covid', 'name': 'Energy loss and fatigue 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{'filtered': False, 'severity': 'safe'}, 'sexual': {'filtered': False, 'severity': 'safe'}, 'violence': {'filtered': False, 'severity': 'safe'}}}]}, 'themes': prompt='You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \'code\' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i\'ve learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today\'s interview is an example of just that hi everyone i\'m ralan if you\'re new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i\'m super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let\'s dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn\'t have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn\'t have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i\'ve had jason on the channel before that\'s jason mctiernan\'s program correct i can thrive yeah i\'ve interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he\'s a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you\'re going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i\'m by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we\'re in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you\'re even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i\'m training for a full marathon with some of my friends and before i don\'t think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it\'s a horrible thing to go through but thankfully there\'s a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn\'t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that\'s more of a journey rather than oh i\'m stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it\'s meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you\'re going through the program if someone\'s watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you\'ll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there\'s online videos that he\'ll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\'re doing great and it\'s just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he\'d give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program\'s working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there\'s still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i\'m still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that\'s a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we\'re going to keep going to keep having symptoms and different things in our lives to let us know what\'s going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i\'ve got the tools i know what to do i can get past it yeah so for you have anything that you\'d want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you\'d say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you\'re feeling even if you haven\'t found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they\'re facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he\'ll always tell you that you got this and it\'s a journey so can\'t just keep comparing yourself to where you\'ve been like you\'re on the right path to recovery\n\nSPEAKER_00: amazing well i\'m so so happy for you kelly this is incredible i\'m happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it\'s always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don\'t want people watching to feel discouraged if their recovery doesn\'t happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you\'re interested in learning more about jason mctiernan and his program i can thrive we\'ll put a video here to help you get a better sense of what that\'s all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n</text>\n\n--\n\ncodes=[Code(slug=\'energy-loss-and-fatigue-in-cfs-long-covid\', name=\'Energy loss and fatigue reducing daily activity\', description=\'Participant experienced a noticeable drop in energy and motivation to engage in usual activities, leading to extended periods of rest and physical symptoms like canker sores, reflecting the debilitating impact of CFS/long COVID on daily life.\', quotes=["...i just started to get really tired and i didn\'t have the motivation to go out and do as many activities...", \'...laying in bed i would get these canker sores and just overall not feeling the best\']), Code(slug=\'frustration-of-inconclusive-medical-tests\', name=\'Frustration from inconclusive medical investigations\', description=\'Participant felt frustration and uncertainty when medical tests showed normal results despite ongoing symptoms, leading to self-doubt about the origin of symptoms and exploration of mental health explanations.\', quotes=[\'...i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work...\', \'...thought maybe it was something mentally that was causing this\']), Code(slug=\'initial-skepticism-of-brain-retraining-technique\', name=\'Initial skepticism towards brain retraining techniques\', description=\'Participant was initially doubtful about the efficacy of brain retraining and hypnosis-related methods but committed to the program and found these techniques effective for symptom management and anxiety reduction.\', quotes=[\'...in the beginning i was a little skeptical because the program does have like a hypnosis type of effect...\', \'...once i really committed to learning the program it really made a difference\']), Code(slug=\'importance-of-mental-stamina-for-active-recovery\', name=\'Importance of mental stamina for physical activity recovery\', description=\'Participant emphasized the growth in mental stamina and positive mindset as critical to progressing from basic functioning to running a 10k and training for a marathon, showing the mental aspects integral to physical recovery.\', quotes=["...before i don\'t think i would have had the mental stamina to do that...", \'...now i just have that positive affirmations and changing the way of my mindset from fix to growth...\']), Code(slug=\'valuing-supportive-encouragement-in-recovery\', name=\'Valuing supportive and personal encouragement during recovery\', description=\'Participant highlighted how personalized encouragement and belief from program coach Jason boosted motivation and aided recovery, illustrating the importance of personal connection in healing journeys.\', quotes=["...he would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\'re doing great...", "...it\'s just great having someone who believes in you that much..."]), Code(slug=\'developing-empowering-self-statements\', name=\'Developing empowering self-statements to combat anxiety\', description=\'Participant learned to replace disempowering anxiety statements with growth-oriented affirmations, facilitating a more positive and hopeful mindset conducive to ongoing recovery and emotional resilience.\', quotes=["...i didn\'t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better...", "...that\'s more of a journey rather than oh i\'m stuck at this state of anxiety..."]), Code(slug=\'recognizing-the-journey-of-recovery-not-a-fix\', name=\'Recognizing recovery as a journey, not a fixed state\', description=\'Participant expressed understanding that recovery involves ongoing management rather than complete absence of symptoms, using tools to address fluctuations and maintain progress without fear.\', quotes=["...i have now these tools to fix that so obviously you know life is stressful i\'m still going to have some anxious moments but i can refocus and use these tools...", "...you got this and it\'s a journey so can\'t just keep comparing yourself to where you\'ve been..."])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \'theme\' is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \'share\' codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\'s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clichés, generalizations. Avoid the word \'Navigating\' in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json' output={'themes': [{'name': 'Experiencing energy loss and frustration from inconclusive medical answers', 'description': 'Participant felt a noticeable drop in energy and motivation, describing how fatigue led to extended rest and physical symptoms like canker sores. Despite visiting doctors who confirmed their vitals and blood work as normal, the participant experienced frustration and doubt, exploring mental health as a possible cause, highlighting the emotional uncertainty accompanying unexplained symptoms.', 'code_slugs': ['energy-loss-and-fatigue-in-cfs-long-covid', 'frustration-of-inconclusive-medical-tests']}, {'name': 'Initial doubts and subsequent trust in brain retraining healing techniques', 'description': 'Participant was initially skeptical about hypnosis and brain retraining methods offered by the program but found commitment to these techniques effective for symptom relief and anxiety management. The journey from doubt to acceptance shows a shift in mindset, embracing unconventional healing that fundamentally changed their approach to recovery.', 'code_slugs': ['initial-skepticism-of-brain-retraining-technique']}, {'name': 'Building mental stamina and positive mindset for physical recovery challenges', 'description': 'The participant highlighted the importance of developing mental stamina and adopting positive affirmations, enabling progression from basic daily functioning to running 10K races and training for marathons. This growth mindset and empowerment were pivotal in sustaining motivation and embracing physical challenges beyond previous limits.', 'code_slugs': ['importance-of-mental-stamina-for-active-recovery']}, {'name': 'Finding motivation through personal encouragement and belief from support', 'description': 'Participant valued the personalized, encouraging support they received from their coach, which boosted motivation and belief in recovery despite ongoing challenges. Regular texts and genuine belief from someone invested, even as a stranger, made a meaningful difference in maintaining hope and progress.', 'code_slugs': ['valuing-supportive-encouragement-in-recovery']}, {'name': 'Adopting empowering self-talk to transform anxiety into recovery progress', 'description': "The participant discovered replacing disempowering anxiety statements with affirmations like 'I am on my way to getting better' fostered a positive, hopeful mindset. This shift transformed their experience of anxiety from feeling stuck to seeing it as a stage in an ongoing health journey, supporting emotional resilience.", 'code_slugs': ['developing-empowering-self-statements']}, {'name': 'Accepting recovery as a continuous journey with tools for setbacks', 'description': 'Participant recognized recovery as an ongoing journey rather than a fixed, fully cured state, understanding that life will bring stress and anxious moments. They emphasized having tools to manage symptoms and refocus, cultivating confidence to maintain progress and face fluctuations without fear or discouragement.', 'code_slugs': ['recognizing-the-journey-of-recovery-not-a-fix']}]} completion={'id': 'chatcmpl-COIsy0jpWAOKvh4VUL86sxzNdcbuj', 'created': 1759908504, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"themes":[{"name":"Experiencing energy loss and frustration from inconclusive medical answers","description":"Participant felt a noticeable drop in energy and motivation, describing how fatigue led to extended rest and physical symptoms like canker sores. Despite visiting doctors who confirmed their vitals and blood work as normal, the participant experienced frustration and doubt, exploring mental health as a possible cause, highlighting the emotional uncertainty accompanying unexplained symptoms.","code_slugs":["energy-loss-and-fatigue-in-cfs-long-covid","frustration-of-inconclusive-medical-tests"]},{"name":"Initial doubts and subsequent trust in brain retraining healing techniques","description":"Participant was initially skeptical about hypnosis and brain retraining methods offered by the program but found commitment to these techniques effective for symptom relief and anxiety management. The journey from doubt to acceptance shows a shift in mindset, embracing unconventional healing that fundamentally changed their approach to recovery.","code_slugs":["initial-skepticism-of-brain-retraining-technique"]},{"name":"Building mental stamina and positive mindset for physical recovery challenges","description":"The participant highlighted the importance of developing mental stamina and adopting positive affirmations, enabling progression from basic daily functioning to running 10K races and training for marathons. This growth mindset and empowerment were pivotal in sustaining motivation and embracing physical challenges beyond previous limits.","code_slugs":["importance-of-mental-stamina-for-active-recovery"]},{"name":"Finding motivation through personal encouragement and belief from support","description":"Participant valued the personalized, encouraging support they received from their coach, which boosted motivation and belief in recovery despite ongoing challenges. Regular texts and genuine belief from someone invested, even as a stranger, made a meaningful difference in maintaining hope and progress.","code_slugs":["valuing-supportive-encouragement-in-recovery"]},{"name":"Adopting empowering self-talk to transform anxiety into recovery progress","description":"The participant discovered replacing disempowering anxiety statements with affirmations like \'I am on my way to getting better\' fostered a positive, hopeful mindset. This shift transformed their experience of anxiety from feeling stuck to seeing it as a stage in an ongoing health journey, supporting emotional resilience.","code_slugs":["developing-empowering-self-statements"]},{"name":"Accepting recovery as a continuous journey with tools for setbacks","description":"Participant recognized recovery as an ongoing journey rather than a fixed, fully cured state, understanding that life will bring stress and anxious moments. They emphasized having tools to manage symptoms and refocus, cultivating confidence to maintain progress and face fluctuations without fear or discouragement.","code_slugs":["recognizing-the-journey-of-recovery-not-a-fix"]}]}', 'name': 'Themes'}, 'id': 'call_7Ij2N5diQNTy4MHSqIx5NH7X', 'type': 'function'}], 'function_call': None, 'annotations': []}, 'provider_specific_fields': {}}], 'usage': {'completion_tokens': 535, 'prompt_tokens': 3765, 'total_tokens': 4300, 'completion_tokens_details': {'accepted_prediction_tokens': None, 'audio_tokens': 0, 'reasoning_tokens': 0, 'rejected_prediction_tokens': None}, 'prompt_tokens_details': {'audio_tokens': 0, 'cached_tokens': 0}}, 'service_tier': None, 'prompt_filter_results': [{'prompt_index': 0, 'content_filter_results': {'hate': {'filtered': False, 'severity': 'safe'}, 'jailbreak': {'filtered': False, 'detected': False}, 'self_harm': {'filtered': False, 'severity': 'safe'}, 'sexual': {'filtered': False, 'severity': 'safe'}, 'violence': {'filtered': False, 'severity': 'safe'}}}]}})] |
| item_6 | item_6 | 6 | You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nTranscripts from https://www.youtube.com/c/RaelanAgle\n8 patients who have recovered from CFS/ME and Long COVID talk about their illness.\n</text>\nAlways use the tools/JSON response.\n\n```json | {'themes': [{'name': 'Living with isolation and frustration from long COVID symptoms', 'description': "This theme captures participants' feelings of being drained and disconnected due to persistent symptoms that limit physical and social activities. They express frustration with ongoing symptoms that drag them down and the emotional toll of feeling alone because others don't see or understand their daily struggle.", 'code_slugs': ['long-covid-frustration-and-isolation']}, {'name': 'Seeking empathy and validation from family, doctors, and society', 'description': 'Participants strongly desire recognition and belief in their experiences with long COVID and ME/CFS. They emphasize how validation from doctors, family, and others is crucial to reduce feelings of stigmatization and misunderstanding, providing essential emotional support and helping them feel that their condition is real and acknowledged.', 'code_slugs': ['desire-for-understanding-and-validation']}, {'name': 'Yearning to recover physical strength and resume normal activities', 'description': 'There is a poignant longing among participants to regain lost physical energy and return to activities they once enjoyed, such as jogging, playing with children, and routine tasks. The overwhelming fatigue makes even simple tasks difficult, and participants express a strong need to feel like themselves by restoring their physical function and vitality.', 'code_slugs': ['need-to-regain-physical-energy-and-function']}, {'name': 'Persistent search for treatments that bring relief and hope for cure', 'description': 'Participants describe the emotional toll of trying many treatments without success, expressing heartbreak and disappointment. They maintain hope for an effective cure or therapy that will relieve symptoms, stop the pain and fatigue, and allow them to move forward with life beyond their illness.', 'code_slugs': ['search-for-effective-treatment-and-cures']}, {'name': 'Struggling with sense of self and identity after illness onset', 'description': "This theme reflects participants' internal conflict as they mourn their healthy pre-illness identity and grapple with new limitations that alter their roles and self-perception. They speak to the difficulty of accepting these changes and feeling like they have lost their former selves amid the chronic illness experience.", 'code_slugs': ['coping-with-identity-changes']}]} | {'themes': [{'name': 'Living with isolation and frustration from long COVID symptoms', 'description': 'This theme captures participants' feelings of being drained and disconnected due to persistent symptoms that limit physical and social activities. They express frustration with ongoing symptoms that drag them down and the emotional toll of feeling alone because others don't see or understand their daily struggle.', 'code_slugs': ['long-covid-frustration-and-isolation']}, {'name': 'Seeking empathy and validation from family, doctors, and society', 'description': 'Participants strongly desire recognition and belief in their experiences with long COVID and ME/CFS. They emphasize how validation from doctors, family, and others is crucial to reduce feelings of stigmatization and misunderstanding, providing essential emotional support and helping them feel that their condition is real and acknowledged.', 'code_slugs': ['desire-for-understanding-and-validation']}, {'name': 'Yearning to recover physical strength and resume normal activities', 'description': 'There is a poignant longing among participants to regain lost physical energy and return to activities they once enjoyed, such as jogging, playing with children, and routine tasks. The overwhelming fatigue makes even simple tasks difficult, and participants express a strong need to feel like themselves by restoring their physical function and vitality.', 'code_slugs': ['need-to-regain-physical-energy-and-function']}, {'name': 'Persistent search for treatments that bring relief and hope for cure', 'description': 'Participants describe the emotional toll of trying many treatments without success, expressing heartbreak and disappointment. They maintain hope for an effective cure or therapy that will relieve symptoms, stop the pain and fatigue, and allow them to move forward with life beyond their illness.', 'code_slugs': ['search-for-effective-treatment-and-cures']}, {'name': 'Struggling with sense of self and identity after illness onset', 'description': 'This theme reflects participants' internal conflict as they mourn their healthy pre-illness identity and grapple with new limitations that alter their roles and self-perception. They speak to the difficulty of accepting these changes and feeling like they have lost their former selves amid the chronic illness experience.', 'code_slugs': ['coping-with-identity-changes']}]} | [(type, chatter), (results, {'codes': prompt="You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nTranscripts from https://www.youtube.com/c/RaelanAgle\n8 patients who have recovered from CFS/ME and Long COVID talk about their illness.\n</text>\nAlways use the tools/JSON response.\n\n```json" output={'codes': [{'slug': 'long-covid-frustration-and-isolation', 'name': 'Feeling frustrated and isolated due to long COVID limitations', 'description': 'Participants express frustration with the ongoing symptoms and limitations imposed by long COVID, highlighting feelings of isolation and disconnection from their former healthy selves and social life. This includes struggles with physical and cognitive impairments and the emotional toll of not being understood.', 'quotes': ['...I just feel so drained all the time, like I used to be so active and now I can barely manage a short walk...', "...people don't see the struggle you go through every day, it makes you feel very alone...", '...it’s frustrating because you want to get better but the symptoms just keep dragging you down...']}, {'slug': 'desire-for-understanding-and-validation', 'name': 'Desire for understanding and validation from others', 'description': 'Participants highlight a strong need for others to acknowledge and believe their experience with long COVID and ME/CFS, as they often face skepticism or misunderstanding. This recognition is crucial for emotional support and reducing the stigma they encounter.', 'quotes': ['...sometimes it feels like people think it’s all in your head...', '...I just want doctors and my family to really understand what I’m going through...', '...validation would mean the world because it proves that I’m not making this up...']}, {'slug': 'need-to-regain-physical-energy-and-function', 'name': 'Need to regain physical energy and return to normal function', 'description': 'A consistent desire to regain lost physical energy and resume activities that were previously routine is expressed. Participants describe longing to be able to do simple physical tasks, exercise, and engage in social and work activities without debilitating fatigue.', 'quotes': ['...if I could just get some of my energy back, I’d feel like myself again...', '...I miss being able to just go for a jog or play with my kids without getting exhausted...', '...the fatigue is so overwhelming that even making a meal feels like climbing a mountain...']}, {'slug': 'search-for-effective-treatment-and-cures', 'name': 'Search for effective treatment and cures for symptom relief', 'description': 'Participants discuss their ongoing search for treatments or interventions that can bring relief from symptoms or lead to recovery. This includes frustration at the lack of clear treatments and the trial and error of various therapies.', 'quotes': ['...I’ve tried so many treatments, but nothing seems to really work...', '...it’s heartbreaking to not find anything that helps the pain or fatigue...', '...I keep hoping for a cure that will help me move on with my life...']}, {'slug': 'coping-with-identity-changes', 'name': 'Coping with changes to identity and sense of self', 'description': 'Participants reflect on the impact the illness has had on their identity and sense of self, expressing a mourning for their previous healthy self and struggling with the new limitations and changed roles in relationships and life.', 'quotes': ['...I don’t recognize the person I am now compared to before...', '...it’s hard to accept that I can’t do what I used to do...', '...sometimes I feel like I’ve lost who I was...']}]} completion={'id': 'chatcmpl-COIs4n9Y2amuNmliaiidjC1qQLUF7', 'created': 1759908448, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"codes":[{"slug":"long-covid-frustration-and-isolation","name":"Feeling frustrated and isolated due to long COVID limitations","description":"Participants express frustration with the ongoing symptoms and limitations imposed by long COVID, highlighting feelings of isolation and disconnection from their former healthy selves and social life. This includes struggles with physical and cognitive impairments and the emotional toll of not being understood.","quotes":["...I just feel so drained all the time, like I used to be so active and now I can barely manage a short walk...","...people don\'t see the struggle you go through every day, it makes you feel very alone...","...it’s frustrating because you want to get better but the symptoms just keep dragging you down..."]},{"slug":"desire-for-understanding-and-validation","name":"Desire for understanding and validation from others","description":"Participants highlight a strong need for others to acknowledge and believe their experience with long COVID and ME/CFS, as they often face skepticism or misunderstanding. This recognition is crucial for emotional support and reducing the stigma they encounter.","quotes":["...sometimes it feels like people think it’s all in your head...","...I just want doctors and my family to really understand what I’m going through...","...validation would mean the world because it proves that I’m not making this up..."]},{"slug":"need-to-regain-physical-energy-and-function","name":"Need to regain physical energy and return to normal function","description":"A consistent desire to regain lost physical energy and resume activities that were previously routine is expressed. Participants describe longing to be able to do simple physical tasks, exercise, and engage in social and work activities without debilitating fatigue.","quotes":["...if I could just get some of my energy back, I’d feel like myself again...","...I miss being able to just go for a jog or play with my kids without getting exhausted...","...the fatigue is so overwhelming that even making a meal feels like climbing a mountain..."]},{"slug":"search-for-effective-treatment-and-cures","name":"Search for effective treatment and cures for symptom relief","description":"Participants discuss their ongoing search for treatments or interventions that can bring relief from symptoms or lead to recovery. This includes frustration at the lack of clear treatments and the trial and error of various therapies.","quotes":["...I’ve tried so many treatments, but nothing seems to really work...","...it’s heartbreaking to not find anything that helps the pain or fatigue...","...I keep hoping for a cure that will help me move on with my life..."]},{"slug":"coping-with-identity-changes","name":"Coping with changes to identity and sense of self","description":"Participants reflect on the impact the illness has had on their identity and sense of self, expressing a mourning for their previous healthy self and struggling with the new limitations and changed roles in relationships and life.","quotes":["...I don’t recognize the person I am now compared to before...","...it’s hard to accept that I can’t do what I used to do...","...sometimes I feel like I’ve lost who I was..."]}]}', 'name': 'CodeList'}, 'id': 'call_lNPN9HWWlx11gkzyeO3VBqwn', 'type': 'function'}], 'function_call': None, 'annotations': []}, 'provider_specific_fields': {}}], 'usage': {'completion_tokens': 631, 'prompt_tokens': 559, 'total_tokens': 1190, 'completion_tokens_details': {'accepted_prediction_tokens': None, 'audio_tokens': 0, 'reasoning_tokens': 0, 'rejected_prediction_tokens': None}, 'prompt_tokens_details': {'audio_tokens': 0, 'cached_tokens': 0}}, 'service_tier': None, 'prompt_filter_results': [{'prompt_index': 0, 'content_filter_results': {'hate': {'filtered': False, 'severity': 'safe'}, 'jailbreak': {'filtered': False, 'detected': False}, 'self_harm': {'filtered': False, 'severity': 'safe'}, 'sexual': {'filtered': False, 'severity': 'safe'}, 'violence': {'filtered': False, 'severity': 'safe'}}}]}, 'themes': prompt='You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \'code\' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nTranscripts from https://www.youtube.com/c/RaelanAgle\n8 patients who have recovered from CFS/ME and Long COVID talk about their illness.\n</text>\n\n--\n\ncodes=[Code(slug=\'long-covid-frustration-and-isolation\', name=\'Feeling frustrated and isolated due to long COVID limitations\', description=\'Participants express frustration with the ongoing symptoms and limitations imposed by long COVID, highlighting feelings of isolation and disconnection from their former healthy selves and social life. This includes struggles with physical and cognitive impairments and the emotional toll of not being understood.\', quotes=[\'...I just feel so drained all the time, like I used to be so active and now I can barely manage a short walk...\', "...people don\'t see the struggle you go through every day, it makes you feel very alone...", \'...it’s frustrating because you want to get better but the symptoms just keep dragging you down...\']), Code(slug=\'desire-for-understanding-and-validation\', name=\'Desire for understanding and validation from others\', description=\'Participants highlight a strong need for others to acknowledge and believe their experience with long COVID and ME/CFS, as they often face skepticism or misunderstanding. This recognition is crucial for emotional support and reducing the stigma they encounter.\', quotes=[\'...sometimes it feels like people think it’s all in your head...\', \'...I just want doctors and my family to really understand what I’m going through...\', \'...validation would mean the world because it proves that I’m not making this up...\']), Code(slug=\'need-to-regain-physical-energy-and-function\', name=\'Need to regain physical energy and return to normal function\', description=\'A consistent desire to regain lost physical energy and resume activities that were previously routine is expressed. Participants describe longing to be able to do simple physical tasks, exercise, and engage in social and work activities without debilitating fatigue.\', quotes=[\'...if I could just get some of my energy back, I’d feel like myself again...\', \'...I miss being able to just go for a jog or play with my kids without getting exhausted...\', \'...the fatigue is so overwhelming that even making a meal feels like climbing a mountain...\']), Code(slug=\'search-for-effective-treatment-and-cures\', name=\'Search for effective treatment and cures for symptom relief\', description=\'Participants discuss their ongoing search for treatments or interventions that can bring relief from symptoms or lead to recovery. This includes frustration at the lack of clear treatments and the trial and error of various therapies.\', quotes=[\'...I’ve tried so many treatments, but nothing seems to really work...\', \'...it’s heartbreaking to not find anything that helps the pain or fatigue...\', \'...I keep hoping for a cure that will help me move on with my life...\']), Code(slug=\'coping-with-identity-changes\', name=\'Coping with changes to identity and sense of self\', description=\'Participants reflect on the impact the illness has had on their identity and sense of self, expressing a mourning for their previous healthy self and struggling with the new limitations and changed roles in relationships and life.\', quotes=[\'...I don’t recognize the person I am now compared to before...\', \'...it’s hard to accept that I can’t do what I used to do...\', \'...sometimes I feel like I’ve lost who I was...\'])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \'theme\' is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \'share\' codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\'s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clichés, generalizations. Avoid the word \'Navigating\' in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json' output={'themes': [{'name': 'Living with isolation and frustration from long COVID symptoms', 'description': "This theme captures participants' feelings of being drained and disconnected due to persistent symptoms that limit physical and social activities. They express frustration with ongoing symptoms that drag them down and the emotional toll of feeling alone because others don't see or understand their daily struggle.", 'code_slugs': ['long-covid-frustration-and-isolation']}, {'name': 'Seeking empathy and validation from family, doctors, and society', 'description': 'Participants strongly desire recognition and belief in their experiences with long COVID and ME/CFS. They emphasize how validation from doctors, family, and others is crucial to reduce feelings of stigmatization and misunderstanding, providing essential emotional support and helping them feel that their condition is real and acknowledged.', 'code_slugs': ['desire-for-understanding-and-validation']}, {'name': 'Yearning to recover physical strength and resume normal activities', 'description': 'There is a poignant longing among participants to regain lost physical energy and return to activities they once enjoyed, such as jogging, playing with children, and routine tasks. The overwhelming fatigue makes even simple tasks difficult, and participants express a strong need to feel like themselves by restoring their physical function and vitality.', 'code_slugs': ['need-to-regain-physical-energy-and-function']}, {'name': 'Persistent search for treatments that bring relief and hope for cure', 'description': 'Participants describe the emotional toll of trying many treatments without success, expressing heartbreak and disappointment. They maintain hope for an effective cure or therapy that will relieve symptoms, stop the pain and fatigue, and allow them to move forward with life beyond their illness.', 'code_slugs': ['search-for-effective-treatment-and-cures']}, {'name': 'Struggling with sense of self and identity after illness onset', 'description': "This theme reflects participants' internal conflict as they mourn their healthy pre-illness identity and grapple with new limitations that alter their roles and self-perception. They speak to the difficulty of accepting these changes and feeling like they have lost their former selves amid the chronic illness experience.", 'code_slugs': ['coping-with-identity-changes']}]} completion={'id': 'chatcmpl-COIsxuHiDQ5tHEzcAxJP6UriEdU7K', 'created': 1759908503, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"themes":[{"name":"Living with isolation and frustration from long COVID symptoms","description":"This theme captures participants\' feelings of being drained and disconnected due to persistent symptoms that limit physical and social activities. They express frustration with ongoing symptoms that drag them down and the emotional toll of feeling alone because others don\'t see or understand their daily struggle.","code_slugs":["long-covid-frustration-and-isolation"]},{"name":"Seeking empathy and validation from family, doctors, and society","description":"Participants strongly desire recognition and belief in their experiences with long COVID and ME/CFS. They emphasize how validation from doctors, family, and others is crucial to reduce feelings of stigmatization and misunderstanding, providing essential emotional support and helping them feel that their condition is real and acknowledged.","code_slugs":["desire-for-understanding-and-validation"]},{"name":"Yearning to recover physical strength and resume normal activities","description":"There is a poignant longing among participants to regain lost physical energy and return to activities they once enjoyed, such as jogging, playing with children, and routine tasks. The overwhelming fatigue makes even simple tasks difficult, and participants express a strong need to feel like themselves by restoring their physical function and vitality.","code_slugs":["need-to-regain-physical-energy-and-function"]},{"name":"Persistent search for treatments that bring relief and hope for cure","description":"Participants describe the emotional toll of trying many treatments without success, expressing heartbreak and disappointment. They maintain hope for an effective cure or therapy that will relieve symptoms, stop the pain and fatigue, and allow them to move forward with life beyond their illness.","code_slugs":["search-for-effective-treatment-and-cures"]},{"name":"Struggling with sense of self and identity after illness onset","description":"This theme reflects participants\' internal conflict as they mourn their healthy pre-illness identity and grapple with new limitations that alter their roles and self-perception. They speak to the difficulty of accepting these changes and feeling like they have lost their former selves amid the chronic illness experience.","code_slugs":["coping-with-identity-changes"]}]}', 'name': 'Themes'}, 'id': 'call_Jmo8N8HOJIwcpMZB02sqgtuO', 'type': 'function'}], 'function_call': None, 'annotations': []}, 'provider_specific_fields': {}}], 'usage': {'completion_tokens': 420, 'prompt_tokens': 1462, 'total_tokens': 1882, 'completion_tokens_details': {'accepted_prediction_tokens': None, 'audio_tokens': 0, 'reasoning_tokens': 0, 'rejected_prediction_tokens': None}, 'prompt_tokens_details': {'audio_tokens': 0, 'cached_tokens': 0}}, 'service_tier': None, 'prompt_filter_results': [{'prompt_index': 0, 'content_filter_results': {'hate': {'filtered': False, 'severity': 'safe'}, 'jailbreak': {'filtered': False, 'detected': False}, 'self_harm': {'filtered': False, 'severity': 'safe'}, 'sexual': {'filtered': False, 'severity': 'safe'}, 'violence': {'filtered': False, 'severity': 'safe'}}}]}})] |
| item_7 | item_7 | 7 | You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n</text>\nAlways use the tools/JSON response.\n\n```json | {'themes': [{'name': 'Experiencing anger and anxiety as uncontrollable physiological 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Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n</text>\nAlways use the tools/JSON response.\n\n```json" output={'codes': [{'slug': 'anger-fight-flight-physiology-chronic-pain', 'name': 'Anger as fight or flight physiology driving chronic pain', 'description': 'Participants describe anger not as a psychological issue but as a physiological survival response generated by fight or flight sensations in the body. This intense physiological arousal leads to chronic pain and symptoms that are deeply wired in their nervous system, making them uncontrollable by conscious mind alone.', 'quotes': ["the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight", 'anger and anxiety are physiological survival responses that we have no control over zero', 'anger and anxiety are gifts i mean how you survive without anger and anxiety']}, {'slug': 'chronic-pain-neuroplasticity-memory-pain-circuits', 'name': 'Chronic pain as embedded memory in neuroplastic pain circuits', 'description': "Chronic pain is explained as an embedded memory in the brain's pain circuits that cannot be erased. Participants feel their pain persists because the brain memorizes the pain experience permanently, similar to phantom limb pain. Fighting the pain reinforces these circuits, while acceptance and new living patterns enable transcendence and symptom reduction.", 'quotes': ['the pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone', 'the more you try to fight it and solve it the more you reinforce it', "you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain"]}, {'slug': 'role-of-unconscious-brain-in-survival-and-pain', 'name': 'Unconscious brain drives survival responses and chronic symptoms', 'description': 'Participants express how the unconscious brain processes millions of bits of information per second to keep them alive, without needing the conscious brain. Chronic symptoms arise from unconscious physiological threat states that the conscious brain struggles to control, explaining difficulty in managing chronic illness through conscious effort alone.', 'quotes': ['the unconscious brain keeps you alive we do not need conscious brain to stay alive', 'the unconscious brain is eleven million bits of your patient per second the conscious brain is forty', "you can't control it and so it's like trying to drag stir with handbrakes"]}, {'slug': 'letting-go-fighting-pain-key-to-healing', 'name': 'Letting go of fighting pain as crucial to healing process', 'description': 'Participants describe a shift from actively trying to fix or fight their pain towards letting go and accepting it as key to healing. This change in relationship towards pain reduces reinforcement of pain circuits, enables separation from pain, and supports creating new, pain-free neural pathways through living life on their own terms.', 'quotes': ["the hardest part of this project by far is people can't help but try to fix themselves", 'you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain', "the pain she or you're here as you start getting on with your life the way you want to your terms that's the solution"]}, {'slug': 'threat-physiology-explains-chronic-symptoms', 'name': 'Threat physiology underlies chronic mental and physical symptoms', 'description': 'Participants reveal that chronic symptoms, including pain, anxiety, depression and other diseases, stem from sustained threat physiology involving hyperactive nervous system responses and inflammation. This state breaks down the body over time and maintains symptoms, emphasizing the need to calm the physiology rather than solely treat symptoms.', 'quotes': ['every chronic disease with few exceptions are related to chronic stress', 'the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really', 'chronic fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress']}, {'slug': 'separation-from-negative-thoughts-in-pain', 'name': 'Separating oneself from negative and repetitive thoughts', 'description': 'Participants highlight the importance of separating their identity from negative intrusive thoughts and repetitive thought patterns that fuel anxiety and pain. Techniques like expressive writing, mindfulness and cognitive behavioral therapy help create this separation, reducing the physiological arousal that these thoughts cause.', 'quotes': ["separate from the thoughts that's where my friend is conducted behavior therapy comes into play", 'if you work with that much so that separates you from the thoughts not solving them to say thought separation process', 'by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing']}, {'slug': 'nurturing-joy-for-chronic-pain-healing', 'name': 'Nurturing joy as a vital part of healing journey', 'description': 'Participants emphasize nurturing joy through positive experiences, relationships, and mindset as essential for healing chronic pain and symptoms. Joy helps build new neural pathways, counterbalances threat physiology, and supports a flourishing life beyond pain rather than solely focusing on fixing negative symptoms.', 'quotes': ["the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible", "you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing", "you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs"]}, {'slug': 'importance-of-sleep-diet-exercise-in-nervous-system-calm', 'name': 'Importance of sleep diet and exercise for calming nervous system', 'description': 'Participants discuss sleep, diet, and exercise as foundational pillars to calm the nervous system and support healing. Lack of sleep contributes directly to chronic pain development, and improving these areas helps regulate physiology, reduce inflammation, and promote regeneration, forming an essential part of recovery processes.', 'quotes': ["if you address sleep is number one people weren't sleeping", 'lack of sleep actually causes chronicle back pain not the way around', 'sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system']}, {'slug': 'role-of-physiology-over-conscious-control', 'name': "Physiology's dominance over conscious brain in symptom experience", 'description': 'Participants relate that physiological responses in the nervous system vastly overpower the conscious brain’s ability to control thoughts or symptoms. 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Encouraging embracing skepticism helps people start the healing journey by connecting with their own experience rather than blind belief, promoting curiosity and gradual learning to shift physiology and symptoms.', 'quotes': ["i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said", "the key is connect to what's in there which is skepticism", 'connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change']}]} completion={'id': 'chatcmpl-COIs4eGPNYbdacJ9CUeyNWri0yPyF', 'created': 1759908448, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"codes":[{"slug":"anger-fight-flight-physiology-chronic-pain","name":"Anger as fight or flight physiology driving chronic pain","description":"Participants describe anger not as a psychological issue but as a physiological survival response generated by fight or flight sensations in the body. This intense physiological arousal leads to chronic pain and symptoms that are deeply wired in their nervous system, making them uncontrollable by conscious mind alone.","quotes":["the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\'s just the sensations generated by your body when you\'re in fight or flight","anger and anxiety are physiological survival responses that we have no control over zero","anger and anxiety are gifts i mean how you survive without anger and anxiety"]},{"slug":"chronic-pain-neuroplasticity-memory-pain-circuits","name":"Chronic pain as embedded memory in neuroplastic pain circuits","description":"Chronic pain is explained as an embedded memory in the brain\'s pain circuits that cannot be erased. Participants feel their pain persists because the brain memorizes the pain experience permanently, similar to phantom limb pain. 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This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \'code\' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\'s just the sensations generated by your body when you\'re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\'m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\'re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\'re diving into what\'s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\'s not all in your head which we always knew it is deeply wired into your nervous system through something we\'ll be exploring right now called threat physiology if you\'re new here i\'m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\'m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\'re stuck in fear loops if your body feels like it\'s always on high alert or if you\'re just exhausted from being told that there\'s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\'s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\'m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\'t wait to get into all of this i\'m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\'s your experience been leading up to today\n\nSPEAKER_01: well i\'ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\'t didn\'t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\'t know what it was and you know it\'s basically just regulated nervous system it\'s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\'t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\'t know what else to do and inadvertently as you\'re not certain turned out sort of to be the answer because we\'re eventually learned that with the brain be so neuroplastic whatever you\'re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\'ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\'s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\'t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\'t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\'t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\'s approach to non operative care surgeons if you address sleep is number one people weren\'t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\'s just the sensations generated by your body when you\'re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\'t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\'s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\'s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\'s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\'re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\'s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\'t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\'re in fight or flight your highest thinking party or brain the neocortex doesn\'t work so when you\'re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\'re just reacting you\'re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\'s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\'re in all this pain you\'re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\'m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\'m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\'t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\'s very self directed and i don\'t think as you go too much in the details of the course now because the idea is it\'s about learning skills so what\'s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\'s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\'s in constant fight or flight your body\'s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\'s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\'re focused on structure and so the problem is we\'re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\'ve all these symptoms we kind of we can\'t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\'s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\'s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\'s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\'re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\'s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\'s gone and the reason for that again i can theorize on it but it\'s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\'s gone skin rashes would pop up over my body that\'s gone and back pain neck pain that\'s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\'s living the best life of his entire life that\'s after twenty eight surgery there\'s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\'s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\'t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\'s one part of it the other half is nurturing joy so again you can nurture joy if you\'re fighting stress not possible you can think you are in trying to distract yourself but it\'s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\'re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\'s a bit more complicated that but not much and i\'ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\'s ways of process your stresses differently so they have less impact on your nervous system there\'s ways of making nervous system going from hyper reactive to call and there is a physiology there\'s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\'s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\'re my office and you have chronic pain as you look when you walk in the office you\'ll never discuss your pain ever with anybody and because what\'s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\'m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\'s it doing to your physiology right so that\'s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\'s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\'re in pain you are complaining about the doctors medical system there\'s illnesses you complain about when you\'re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\'m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\'s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\'t talk to it you said to teach it how to feel safe so that\'s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\'re treating only the symptoms so the root causes and we close being address so it\'s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\'ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\'s it we try to really really learn about pain or really solve the problem you\'re actually reinforcing the pain here\'s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\'s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\'ve covered everything that i\'ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\'ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\'t know what else to do and i wasn\'t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\'t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\'re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\'m really struggling to believe that i\'m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\'s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\'s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\'t stay alive you know when across the street we know we\'re not looking to the sun we know how to stay safe but your brain\'s taking it in if mission every second so which is really information it just ignores it because it\'s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\'t fight them and so what you\'re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\'re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\'s the solution it\'s really is so from neuroplasticity standpoint by the way neuroplasticity i\'m sure knows it we do not i didn\'t know this medical school i\'m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\'re doing you\'re trying to direct the brain to change the direction she want and that\'s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\'t bother anymore so it\'s consistent one example right now again i don\'t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\'re not psychological so in zari is the term we use when you\'re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\'t like to embrace it but you do embrace it because it\'s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\'t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\'t work so what you\'re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\'t have thoughts they don\'t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\'t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\'s it so you can\'t control it and so it\'s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\'s what\'s going to happen your conscious brain is respond to what you put into it so it\'s a forty bits of information per second eleven million you decide what you want to load into this thing if you\'re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\'m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\'s the actually physiology first so it\'s about a one to ten second delay your body automatically reacted by the time you think about it so let\'s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\'t have that but just by definition the way the brain works and this is where i think humanity\'s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\'re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\'re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\'re anxious frustrated for any reason you\'re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\'s very unique to humans so we\'re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\'s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\'re gone but i could figure out why and so you have to understand is that there\'s a four part process when these thoughts so the miracle i just start with is that of a hornet\'s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\'re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\'s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\'re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\'re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\'re overwhelmed or frustrated we feel trapped and when you\'re angry your nervous system is really fired up so there\'s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\'re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\'s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\'re mostly programmed by negativity right\n\nSPEAKER_01: we\'re raised by criticism do this do this should do this shouldn\'t do that so we\'re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\'re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\'s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\'s not solvable that\'s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\'s not so it\'s not changeable so that\'s the challenge we deal with now is if you\'re open to actually engaging people heal but the key issue is people don\'t believe it you mentioned earlier well what if you talk about this people don\'t buy into it well it\'s a problem so i ask people don\'t believe me so when you leave this podcast or tv show don\'t believe anything i said the key is connect to what\'s in there which is skepticism so i said you don\'t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\'s the definitive healing it\'s not by fixing the negative side it\'s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\'t need it you understand your three physiologies over here you\'re not taking it personally you don\'t need an ego it\'s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\'t spend time with so you know she just gets what she wants anyway so she doesn\'t need an ego\n\nSPEAKER_00: so that goes so i\'m thinking about the people listening watching and i think there\'s a tendency for people to think i\'m somehow going to be the one person that this doesn\'t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\'ll tell you that i don\'t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\'t help but try to fix themselves and when you do that of course your attention\'s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\'t want to become a professional oh really i mean you basically become a professional at life skills so we\'re not being the highest level professional learn how to rig your physiology so i\'ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\'m learning i mean it\'s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\'m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\'s a friend of a friend now i\'m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\'s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\'re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\'t know any of those clear back forty years ago you don\'t operate on people that are suicidally depressed you just don\'t do that well that\'s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\'m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\'s not suicidal the pain is still there but he doesn\'t react so much which is always the first thing with pain that is there doesn\'t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\'t have pain so people do go to pain free and it\'s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\'m going to try anyway there\'s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\'s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\'m just thinking this is a lot of information for people watching listening so if you\'re feeling like i think maybe i retained ten percent of that don\'t worry watch it again i\'m already thinking i\'m going to have to go back and replay this and i\'m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\'s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\'s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\'s it it shouldn\'t be work should be curiosity what\'s going on look at it as just learning skills it\'s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\'re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\'s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\'m also going to link if you\'re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\'ll link that up on the screen as well if people want to check that out it\'s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\'s my mentor oh and we play golf together we stay each other\'s houses and stuff so he\'s wonderful he\'s very academic he keeps doing the research on it and he\'s really really wonderful\n\nSPEAKER_00: yeah he i\'ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\'s lives it\'s it\'s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n</text>\n\n--\n\ncodes=[Code(slug=\'anger-fight-flight-physiology-chronic-pain\', name=\'Anger as fight or flight physiology driving chronic pain\', description=\'Participants describe anger not as a psychological issue but as a physiological survival response generated by fight or flight sensations in the body. This intense physiological arousal leads to chronic pain and symptoms that are deeply wired in their nervous system, making them uncontrollable by conscious mind alone.\', quotes=["the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\'s just the sensations generated by your body when you\'re in fight or flight", \'anger and anxiety are physiological survival responses that we have no control over zero\', \'anger and anxiety are gifts i mean how you survive without anger and anxiety\']), Code(slug=\'chronic-pain-neuroplasticity-memory-pain-circuits\', name=\'Chronic pain as embedded memory in neuroplastic pain circuits\', description="Chronic pain is explained as an embedded memory in the brain\'s pain circuits that cannot be erased. Participants feel their pain persists because the brain memorizes the pain experience permanently, similar to phantom limb pain. Fighting the pain reinforces these circuits, while acceptance and new living patterns enable transcendence and symptom reduction.", quotes=[\'the pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone\', \'the more you try to fight it and solve it the more you reinforce it\', "you walk past them you can transcend but you can\'t fight them and so what you\'re doing is you learn to separate yourself from your pain"]), Code(slug=\'role-of-unconscious-brain-in-survival-and-pain\', name=\'Unconscious brain drives survival responses and chronic symptoms\', description=\'Participants express how the unconscious brain processes millions of bits of information per second to keep them alive, without needing the conscious brain. Chronic symptoms arise from unconscious physiological threat states that the conscious brain struggles to control, explaining difficulty in managing chronic illness through conscious effort alone.\', quotes=[\'the unconscious brain keeps you alive we do not need conscious brain to stay alive\', \'the unconscious brain is eleven million bits of your patient per second the conscious brain is forty\', "you can\'t control it and so it\'s like trying to drag stir with handbrakes"]), Code(slug=\'letting-go-fighting-pain-key-to-healing\', name=\'Letting go of fighting pain as crucial to healing process\', description=\'Participants describe a shift from actively trying to fix or fight their pain towards letting go and accepting it as key to healing. This change in relationship towards pain reduces reinforcement of pain circuits, enables separation from pain, and supports creating new, pain-free neural pathways through living life on their own terms.\', quotes=["the hardest part of this project by far is people can\'t help but try to fix themselves", \'you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain\', "the pain she or you\'re here as you start getting on with your life the way you want to your terms that\'s the solution"]), Code(slug=\'threat-physiology-explains-chronic-symptoms\', name=\'Threat physiology underlies chronic mental and physical symptoms\', description=\'Participants reveal that chronic symptoms, including pain, anxiety, depression and other diseases, stem from sustained threat physiology involving hyperactive nervous system responses and inflammation. This state breaks down the body over time and maintains symptoms, emphasizing the need to calm the physiology rather than solely treat symptoms.\', quotes=[\'every chronic disease with few exceptions are related to chronic stress\', \'the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really\', \'chronic fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress\']), Code(slug=\'separation-from-negative-thoughts-in-pain\', name=\'Separating oneself from negative and repetitive thoughts\', description=\'Participants highlight the importance of separating their identity from negative intrusive thoughts and repetitive thought patterns that fuel anxiety and pain. Techniques like expressive writing, mindfulness and cognitive behavioral therapy help create this separation, reducing the physiological arousal that these thoughts cause.\', quotes=["separate from the thoughts that\'s where my friend is conducted behavior therapy comes into play", \'if you work with that much so that separates you from the thoughts not solving them to say thought separation process\', \'by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing\']), Code(slug=\'nurturing-joy-for-chronic-pain-healing\', name=\'Nurturing joy as a vital part of healing journey\', description=\'Participants emphasize nurturing joy through positive experiences, relationships, and mindset as essential for healing chronic pain and symptoms. Joy helps build new neural pathways, counterbalances threat physiology, and supports a flourishing life beyond pain rather than solely focusing on fixing negative symptoms.\', quotes=["the other half is nurturing joy so again you can nurture joy if you\'re fighting stress not possible", "you nurture joy good food good wine good friends your brain develops that direction that\'s the definitive healing", "you learn a common physiology and then when you\'re on then you do what you want to do so the healing actually occurs"]), Code(slug=\'importance-of-sleep-diet-exercise-in-nervous-system-calm\', name=\'Importance of sleep diet and exercise for calming nervous system\', description=\'Participants discuss sleep, diet, and exercise as foundational pillars to calm the nervous system and support healing. Lack of sleep contributes directly to chronic pain development, and improving these areas helps regulate physiology, reduce inflammation, and promote regeneration, forming an essential part of recovery processes.\', quotes=["if you address sleep is number one people weren\'t sleeping", \'lack of sleep actually causes chronicle back pain not the way around\', \'sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system\']), Code(slug=\'role-of-physiology-over-conscious-control\', name="Physiology\'s dominance over conscious brain in symptom experience", description=\'Participants relate that physiological responses in the nervous system vastly overpower the conscious brain’s ability to control thoughts or symptoms. Fight or flight states inhibit neocortex functions and cognitive thinking, resulting in automatic reactions and making conscious efforts insufficient to manage symptoms alone.\', quotes=["it\'s about half a million times stronger than your conscious brain", "when you\'re in fight or flight your highest thinking party or brain the neocortex doesn\'t work", "by the time you think about it so let\'s have a thoughts for second"]), Code(slug=\'skepticism-as-starting-point-for-healing-engagement\', name=\'Using skepticism as a starting point to engage in healing\', description=\'Participants express that skepticism is a natural and valid initial stance for people learning this approach. Encouraging embracing skepticism helps people start the healing journey by connecting with their own experience rather than blind belief, promoting curiosity and gradual learning to shift physiology and symptoms.\', quotes=["i ask people don\'t believe me so when you leave this podcast or tv show don\'t believe anything i said", "the key is connect to what\'s in there which is skepticism", \'connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change\'])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \'theme\' is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \'share\' codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\'s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clichés, generalizations. Avoid the word \'Navigating\' in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json' output={'themes': [{'name': 'Experiencing anger and anxiety as uncontrollable physiological survival responses', 'description': "Participants experience anger and anxiety not as psychological issues but as automatic fight or flight sensations generated by their body. These physiological survival responses drive chronic pain and related symptoms, overpowering conscious control and leading to deep frustration and feeling trapped by their body's intense reactions and threat states.", 'code_slugs': ['anger-fight-flight-physiology-chronic-pain', 'threat-physiology-explains-chronic-symptoms', 'role-of-physiology-over-conscious-control']}, {'name': 'Living with chronic pain as a persistent brain-embedded memory and changing the pain relationship', 'description': 'Participants perceive chronic pain as an embedded memory circuit in their brain that cannot be erased, similar to phantom limb pain. Fighting this pain reinforces the circuits, but by separating themselves from the pain and accepting it, they begin to transcend the pain and create new neural pathways, enabling them to live on their own terms despite persistent symptoms.', 'code_slugs': ['chronic-pain-neuroplasticity-memory-pain-circuits', 'letting-go-fighting-pain-key-to-healing']}, {'name': 'Struggling with repetitive negative thoughts and learning to separate from them to reduce distress', 'description': 'Participants face distressing repetitive negative thoughts that fuel anxiety and chronic symptoms. They describe using tools like expressive writing and mindfulness to separate their identity from these thoughts, reducing physiological arousal and suffering. This process is crucial to breaking cycles of mental rigidity and anger that block healing.', 'code_slugs': ['separation-from-negative-thoughts-in-pain']}, {'name': 'Finding joy and safety as essential pathways to healing beyond pain and stress', 'description': 'Participants emphasize nurturing joy through positive experiences, relationships, and a playful curious attitude to counterbalance threat physiology. They find that embodying safety physiology by managing nervous system stress, prioritizing sleep, diet, and exercise, and interpersonal support creates a state where the body can heal itself and symptoms resolve, enabling a thriving life beyond chronic illness.', 'code_slugs': ['nurturing-joy-for-chronic-pain-healing', 'importance-of-sleep-diet-exercise-in-nervous-system-calm']}, {'name': 'Embracing skepticism and curiosity as starting points for holistic healing engagement', 'description': 'Participants express that embracing skepticism rather than blind belief is an important initial step. Connecting with one’s doubts encourages curiosity and open-minded learning, which helps people engage in the self-directed skill acquisition needed to calm their physiology, interrupt negative cycles, and progress towards symptom improvement and healing.', 'code_slugs': ['skepticism-as-starting-point-for-healing-engagement']}, {'name': 'Understanding unconscious brain dominance in managing chronic symptoms and survival', 'description': 'Participants highlight how the unconscious brain processes millions of bits of sensory information per second to maintain survival and drive responses that the conscious brain cannot override. This explains the difficulty in controlling chronic symptoms through willpower alone, as unconscious physiological threat states dominate symptom experience and reactions.', 'code_slugs': ['role-of-unconscious-brain-in-survival-and-pain']}]} completion={'id': 'chatcmpl-COIsy3JKHOXgKKPnMtjIAeRvFROti', 'created': 1759908504, 'model': 'gpt-4.1-mini-2025-04-14', 'object': 'chat.completion', 'system_fingerprint': 'fp_3dcd5944f5', 'choices': [{'finish_reason': 'tool_calls', 'index': 0, 'message': {'content': None, 'role': 'assistant', 'tool_calls': [{'function': {'arguments': '{"themes":[{"name":"Experiencing anger and anxiety as uncontrollable physiological survival responses","description":"Participants experience anger and anxiety not as psychological issues but as automatic fight or flight sensations generated by their body. These physiological survival responses drive chronic pain and related symptoms, overpowering conscious control and leading to deep frustration and feeling trapped by their body\'s intense reactions and threat states.","code_slugs":["anger-fight-flight-physiology-chronic-pain","threat-physiology-explains-chronic-symptoms","role-of-physiology-over-conscious-control"]},{"name":"Living with chronic pain as a persistent brain-embedded memory and changing the pain relationship","description":"Participants perceive chronic pain as an embedded memory circuit in their brain that cannot be erased, similar to phantom limb pain. Fighting this pain reinforces the circuits, but by separating themselves from the pain and accepting it, they begin to transcend the pain and create new neural pathways, enabling them to live on their own terms despite persistent symptoms.","code_slugs":["chronic-pain-neuroplasticity-memory-pain-circuits","letting-go-fighting-pain-key-to-healing"]},{"name":"Struggling with repetitive negative thoughts and learning to separate from them to reduce distress","description":"Participants face distressing repetitive negative thoughts that fuel anxiety and chronic symptoms. They describe using tools like expressive writing and mindfulness to separate their identity from these thoughts, reducing physiological arousal and suffering. 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| item_8 | item_8 | 8 | You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n</text>\nAlways use the tools/JSON response.\n\n```json | {'themes': [{'name': 'Discovering hope and healing through transformative recovery books', 'description': "Participants express a profound sense of hope and inspiration upon discovering pivotal recovery books, such as Dr. John Sarno's work, that deeply resonate with their symptoms and personality traits. These books not only helped them overcome chronic pain and other health issues but also shaped their therapeutic journeys, offering an accessible entry point to understanding their complex experiences and fostering meaningful change.", 'code_slugs': ['book-as-key-to-chronic-pain-recovery']}, {'name': 'Experiencing core healing by accessing and processing suppressed emotions', 'description': 'Participants describe their emotional healing journey centered on emotion-focused therapy, particularly ISTDP, which enables them to safely access, experience, and process suppressed emotions like anger and rage. This process reveals how physical pain manifests from blocked emotions, helping them develop new emotional capacities and gradually dismantle defense mechanisms, ultimately leading to physical and emotional relief.', 'code_slugs': ['emotion-focused-therapy-for-pain', 'emotions-understood-as-physical-pain-source']}, {'name': 'Facing challenges of fear and distrust in engaging deeply with therapy', 'description': 'Participants share the difficulties in engaging with intensive emotion-focused therapy, noting fears, defensive behaviors, and trust issues that create barriers. They emphasize the slow and supportive process needed to expand their emotional thresholds while avoiding setbacks, highlighting the hard work involved in gradually confronting painful emotions that are integral to recovering from chronic pain.', 'code_slugs': ['barriers-to-therapy-engagement-and-trust']}, {'name': 'Feeling validated and hopeful from growing medical recognition of pain therapy', 'description': 'Participants feel encouraged and validated as emotion-focused therapy gains acceptance among medical professionals, contrasting with earlier stigma. They describe increased doctor referrals, training opportunities, and scientific research backing, which fosters hope for broader systemic change and better integration of effective approaches into mainstream medical practice for chronic pain and related conditions.', 'code_slugs': ['transformation-in-professional-acceptance']}, {'name': 'Adapting mindset to accept therapy as essential part of physical healing', 'description': 'Participants reflect on the difficult yet crucial mental shift from viewing therapy as mere coping to recognizing it as an essential healing route. This shift involves breaking down the false divide between mental and physical health and embracing an integrated approach. They recount how this changed perspective enables them to commit more fully to emotion-focused treatments as pathways to recovery beyond just symptom management.', 'code_slugs': ['mindset-shift-needed-for-therapy-acceptance']}]} | {'themes': [{'name': 'Discovering hope and healing through transformative recovery books', 'description': 'Participants express a profound sense of hope and inspiration upon discovering pivotal recovery books, such as Dr. John Sarno's work, that deeply resonate with their symptoms and personality traits. These books not only helped them overcome chronic pain and other health issues but also shaped their therapeutic journeys, offering an accessible entry point to understanding their complex experiences and fostering meaningful change.', 'code_slugs': ['book-as-key-to-chronic-pain-recovery']}, {'name': 'Experiencing core healing by accessing and processing suppressed emotions', 'description': 'Participants describe their emotional healing journey centered on emotion-focused therapy, particularly ISTDP, which enables them to safely access, experience, and process suppressed emotions like anger and rage. This process reveals how physical pain manifests from blocked emotions, helping them develop new emotional capacities and gradually dismantle defense mechanisms, ultimately leading to physical and emotional relief.', 'code_slugs': ['emotion-focused-therapy-for-pain', 'emotions-understood-as-physical-pain-source']}, {'name': 'Facing challenges of fear and distrust in engaging deeply with therapy', 'description': 'Participants share the difficulties in engaging with intensive emotion-focused therapy, noting fears, defensive behaviors, and trust issues that create barriers. They emphasize the slow and supportive process needed to expand their emotional thresholds while avoiding setbacks, highlighting the hard work involved in gradually confronting painful emotions that are integral to recovering from chronic pain.', 'code_slugs': ['barriers-to-therapy-engagement-and-trust']}, {'name': 'Feeling validated and hopeful from growing medical recognition of pain therapy', 'description': 'Participants feel encouraged and validated as emotion-focused therapy gains acceptance among medical professionals, contrasting with earlier stigma. They describe increased doctor referrals, training opportunities, and scientific research backing, which fosters hope for broader systemic change and better integration of effective approaches into mainstream medical practice for chronic pain and related conditions.', 'code_slugs': ['transformation-in-professional-acceptance']}, {'name': 'Adapting mindset to accept therapy as essential part of physical healing', 'description': 'Participants reflect on the difficult yet crucial mental shift from viewing therapy as mere coping to recognizing it as an essential healing route. This shift involves breaking down the false divide between mental and physical health and embracing an integrated approach. They recount how this changed perspective enables them to commit more fully to emotion-focused treatments as pathways to recovery beyond just symptom management.', 'code_slugs': ['mindset-shift-needed-for-therapy-acceptance']}]} | [(type, chatter), (results, {'codes': prompt="You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a 'code' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n</text>\nAlways use the tools/JSON response.\n\n```json" output={'codes': [{'slug': 'book-as-key-to-chronic-pain-recovery', 'name': 'Book as key to chronic pain recovery approach', 'description': 'The participant found a specific book by Dr. John Sarno pivotal in understanding and recovering from chronic pain and multiple other health issues. 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The participant highlights the need for a paradigm shift from viewing mental health as separate to understanding physical and emotional health integration to accept emotion-focused therapy as a vital part of healing chronic pain.","quotes":["most of us think of our mental health and physical health as two separate things","addressing your mental health stuff is a nice to have when i was really sick i started going into therapy but it wasn\'t to make myself get better it was just to help me cope","this is such a change in mindset and our understanding to see this as part of their path to getting better"]},{"slug":"emotions-understood-as-physical-pain-source","name":"Understanding emotions as the source of physical pain","description":"The participant explains how emotions, especially those deemed unacceptable or dangerous, are converted into physical symptoms like chronic pain, supported by MRI studies. This understanding validates the psychological origins of pain and the need to address emotions therapeutically rather than focusing solely on structural damage.","quotes":["sometimes we develop strategies to ward off these uncomfortable or dangerous emotions and for chronic pain patients it tends to be physical pain","MRI research supports the process of emotions transforming into physical form","chronic pain patients brains light up the amygdala which is responsible for emotions like anger and rage","there\'s really no very little relationship between structural changes and the pain that you\'re experiencing"]}]}', 'name': 'CodeList'}, 'id': 'call_upA6I7xS8zb65hicwYQWkf2T', 'type': 'function'}], 'function_call': None, 'annotations': []}, 'provider_specific_fields': {}}], 'usage': {'completion_tokens': 1007, 'prompt_tokens': 5357, 'total_tokens': 6364, 'completion_tokens_details': {'accepted_prediction_tokens': None, 'audio_tokens': 0, 'reasoning_tokens': 0, 'rejected_prediction_tokens': None}, 'prompt_tokens_details': {'audio_tokens': 0, 'cached_tokens': 0}}, 'service_tier': None, 'prompt_filter_results': [{'prompt_index': 0, 'content_filter_results': {'hate': {'filtered': False, 'severity': 'safe'}, 'jailbreak': {'filtered': False, 'detected': False}, 'self_harm': {'filtered': False, 'severity': 'safe'}, 'sexual': {'filtered': False, 'severity': 'safe'}, 'violence': {'filtered': False, 'severity': 'safe'}}}]}, 'themes': prompt='You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \'code\' should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clichés, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n<text>\nSPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\'ve conducted so far if you\'ve listened to even a few you can probably guess what book that is it\'s become such a phenomenon that there\'s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\'re new here welcome i\'m raylan and don\'t worry in this video we\'re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\'t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\'t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\'t need it causes problems for me now but yeah so everything went away i didn\'t do much with it as a practitioner i\'m a counselor but i didn\'t do chronic pain counseling in fact we didn\'t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\'t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\'t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\'t do this back hurting it\'s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\'t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\'t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\'ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\'s a psychologist who works in the department of neurology he opened me up to the whole world of what we\'ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\'s no chemical activity in the brain indicating any seizures and they\'re what\'s called psychogenic seizures and they use the same emotion focused approach i\'ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\'s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\'m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\'t sit down i couldn\'t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\'t get up for i don\'t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\'s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\'s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\'t that doesn\'t cause pain just like gray hair doesn\'t hurt it\'s a psychological problem there\'s quite a bit of evidence now indicating there\'s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\'t have\n\nSPEAKER_00: yeah it\'s interesting our understanding of chronic pain now because we used to think not so long ago well if there\'s no structural damage maybe this is a psychogenic thing but now we\'re seeing that there\'s very little correlation between the level of structural damage and the pain that you\'re experiencing or that the pain being an indication of a level of structural damage they just really aren\'t\n\nSPEAKER_01: radiologists can\'t tell from looking at images who has pain which should be pretty clear cut but it\'s not\n\nSPEAKER_00: so when you read dr john sarno\'s book what was it from the book that was resonating for you and making you think okay this might be what\'s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\'t know if you\'re familiar with some of the things sorrow talked about but they\'re they\'re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\'re the people that run around trying to make everyone feel better we don\'t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\'re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\'t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\'t a structural problem there\'s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\'t one of them and a number of us the people that i see usually are you know they have read it they\'re familiar with it that\'s why they find me but they\'re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\'re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\'s just a beautiful depiction of really good parents and teach a kid that where\'s my happy girl and you can\'t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\'re able to transform this physical or these emotions into physical form there\'s actually quite a bit of mri research that supports this process which is really quite amazing that we\'re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\'ll put someone in an mri kind of apply heat to their finger in a way that doesn\'t hurt the finger but hurts a lot you see the brain lights up there\'s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\'re not familiar it\'s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\'t even need kind of whisper this in the shadows what\'s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\'s it\'s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\'re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\'s more complicated and it\'s harder i was one of the people that\'s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\'ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\'s not a big deal\n\nSPEAKER_01: in istdp we\'re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\'t lie brain will lie they\'ll say i\'m angry i\'m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\'ll see tension\n\nSPEAKER_01: right what do you notice my stomach\'s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\'s anxiety they don\'t know they\'re anxious subconscious what they\'re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\'re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\'s it\'s really quite funny to watch when i run through someone get activated you\'ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\'s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\'s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\'t remember what you said that\'s that\'s a defense and so we\'ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\'t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\'s very different it\'s a looseness it\'s it\'s a warmth it wants to move and push up and out of the person we\'ll see them sign\n\nSPEAKER_01: that\'s an activation we\'ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\'s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\'ll ask them they\'ll have visions you know quick images i have this picture person sometimes it\'s not even a person start to talk about it quickly go to primary caregivers people who use them it\'s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\'t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\'t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\'t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\'s work that they had effectively so i started using it with them with an understanding to say hey you\'re the first people i\'ve seen with this i can\'t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\'s the only thing that i\'ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\'m never the first stop usually the last so you know they\'ll come with all these other things that they\'ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\'t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\'s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\'s it\'s really been incredible to watch the change in fact right after this i\'m going to switch to another zoom meeting and i\'m training doctors here in our local hospital on this as part of a community of us that\'s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\'s a growing recognition even in medical school now they\'re starting to get some there was no pain curriculum medical school and they\'re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\'t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\'s going to be a really painful thing to endure but yet they\'re still struggling with their health what do you think what do you think\'s happening there\n\nSPEAKER_01: yeah that\'s that\'s a good question dealing with emotions is never easy it is some of the hardest work that we\'ll ever do istdp is incredibly difficult approach it\'s incredibly supportive of people but it\'s different and i do liken it to you know some different therapies that people go to that they found helpful but don\'t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\'s great for your health right everybody should go for a walk and walk a lot and it\'s easy and it doesn\'t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\'s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\'re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\'t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\'s the goal with istp so we do look to take people you know a little bit further every time without going too far that\'s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\'re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\'t to make myself get better that wasn\'t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\'s it\'s such a change in mindset and our understanding of what\'s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\'t i find this my answer is always the same you find this when the time\'s right and not everyone\'s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\'s not the right time for them and we\'ll decide together that it\'s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\'s the time that\'s the make or break time people who really believe in it and know that a setback is part of the progress we\'ll stick with it and work through it and get better and people that aren\'t so sure about this will say well this is just bringing up all kinds of stuff you know i\'m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\'t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\'s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\'s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\'re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\'m curious from the viewers what questions you have love to see it and what\'s your experience been with all of this what\'s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\'re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\'re not able to capture them all so there\'s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n</text>\n\n--\n\ncodes=[Code(slug=\'book-as-key-to-chronic-pain-recovery\', name=\'Book as key to chronic pain recovery approach\', description=\'The participant found a specific book by Dr. John Sarno pivotal in understanding and recovering from chronic pain and multiple other health issues. This self-help resource resonated deeply with their symptoms and personality, leading to significant healing and influencing their therapeutic career.\', quotes=[\'i found a book by a guy named john sono... my back pain was gone within a few months ... a lot of other health problems i had suffered with for years went away\', \'sorrow said that a lot of people could get better just by reading the book\', \'the symptoms right the fact that i had always had something really since i was a kid ... it was really resonating\', \'the personality characteristics... were so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions\']), Code(slug=\'emotion-focused-therapy-for-pain\', name=\'Emotion-focused therapy as core to pain recovery process\', description="Emotion-focused therapy, particularly Intensive Short-Term Dynamic Psychotherapy (ISTDP), is central to the participant\'s approach to chronic pain recovery. It focuses on safely accessing and processing suppressed emotions, especially anger and rage, which manifest as physical pain.", quotes=[\'the core of the intervention is this emotion focused approach... all emotions are healthy... we learn to disconnect from these emotions\', \'we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain\', \'brain pain research shows chronic pain lights up the amygdala which is responsible for emotions anger rage\', \'ISTDP therapy allows patients to notice their bodily tension which is often anxiety about feeling anger or rage, helping them process these emotions\']), Code(slug=\'barriers-to-therapy-engagement-and-trust\', name=\'Barriers to engaging with emotion-focused therapy include fear and trust issues\', description=\'The participant acknowledges that many patients struggle with engaging in ISTDP therapy due to fears, defenses, and trust issues. Therapy requires gradual emotional exposure at a tolerable pace to avoid setbacks, with some patients needing more time and support to lower their defenses and benefit.\', quotes=["some folks can work through the process very quickly... but others it\'s more complicated and harder", \'i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions\', \'ISTDP is incredibly difficult but supportive... it requires building emotional threshold gradually\', \'some people resist because dealing with emotions is hard work, their symptoms can flare up as they engage emotionally\']), Code(slug=\'transformation-in-professional-acceptance\', name=\'Growing acceptance of emotion-focused therapy among medical professionals\', description="Over time, there has been significant progress in the medical and professional community\'s acceptance of emotion-focused therapy for chronic pain, with increased training and referrals. Despite previous stigma, doctors now recognize the scientific support and therapeutic benefits, leading to more integration in treatment.", quotes=[\'most of the folks that i work with come to me because they know and understand and accept this\', "i\'m training doctors here in our local hospital on this as part of a community of us that\'s been doing this work", \'medical schools are starting to have pain curriculum now and look towards scientifically supported approaches\', \'doctors call me to see patients because there is a growing recognition of this approach\']), Code(slug=\'mindset-shift-needed-for-therapy-acceptance\', name=\'Mindset shift required for accepting therapy as part of recovery\', description=\'Many patients initially see therapy only as coping rather than a true recovery pathway. The participant highlights the need for a paradigm shift from viewing mental health as separate to understanding physical and emotional health integration to accept emotion-focused therapy as a vital part of healing chronic pain.\', quotes=[\'most of us think of our mental health and physical health as two separate things\', "addressing your mental health stuff is a nice to have when i was really sick i started going into therapy but it wasn\'t to make myself get better it was just to help me cope", \'this is such a change in mindset and our understanding to see this as part of their path to getting better\']), Code(slug=\'emotions-understood-as-physical-pain-source\', name=\'Understanding emotions as the source of physical pain\', description=\'The participant explains how emotions, especially those deemed unacceptable or dangerous, are converted into physical symptoms like chronic pain, supported by MRI studies. This understanding validates the psychological origins of pain and the need to address emotions therapeutically rather than focusing solely on structural damage.\', quotes=[\'sometimes we develop strategies to ward off these uncomfortable or dangerous emotions and for chronic pain patients it tends to be physical pain\', \'MRI research supports the process of emotions transforming into physical form\', \'chronic pain patients brains light up the amygdala which is responsible for emotions like anger and rage\', "there\'s really no very little relationship between structural changes and the pain that you\'re experiencing"])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \'theme\' is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \'share\' codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\'s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clichés, generalizations. Avoid the word \'Navigating\' in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json' output={'themes': [{'name': 'Discovering hope and healing through transformative recovery books', 'description': "Participants express a profound sense of hope and inspiration upon discovering pivotal recovery books, such as Dr. John Sarno's work, that deeply resonate with their symptoms and personality traits. These books not only helped them overcome chronic pain and other health issues but also shaped their therapeutic journeys, offering an accessible entry point to understanding their complex experiences and fostering meaningful change.", 'code_slugs': ['book-as-key-to-chronic-pain-recovery']}, {'name': 'Experiencing core healing by accessing and processing suppressed emotions', 'description': 'Participants describe their emotional healing journey centered on emotion-focused therapy, particularly ISTDP, which enables them to safely access, experience, and process suppressed emotions like anger and rage. This process reveals how physical pain manifests from blocked emotions, helping them develop new emotional capacities and gradually dismantle defense mechanisms, ultimately leading to physical and emotional relief.', 'code_slugs': ['emotion-focused-therapy-for-pain', 'emotions-understood-as-physical-pain-source']}, {'name': 'Facing challenges of fear and distrust in engaging deeply with therapy', 'description': 'Participants share the difficulties in engaging with intensive emotion-focused therapy, noting fears, defensive behaviors, and trust issues that create barriers. They emphasize the slow and supportive process needed to expand their emotional thresholds while avoiding setbacks, highlighting the hard work involved in gradually confronting painful emotions that are integral to recovering from chronic pain.', 'code_slugs': ['barriers-to-therapy-engagement-and-trust']}, {'name': 'Feeling validated and hopeful from growing medical recognition of pain therapy', 'description': 'Participants feel encouraged and validated as emotion-focused therapy gains acceptance among medical professionals, contrasting with earlier stigma. 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Type: Reduce
Inputs: codes_and_themes_per_chunk
Output type: str
codes=[Code(slug='persistent-fatigue-and-energy-drain', name='Persistent fatigue and energy drain on standing', description='Participant describes extreme exhaustion and a complete drain of energy when trying to stand after lying down, leading to being bedridden for 18 months. This fatigue persisted with partial recovery but never complete, impacting daily functioning for many years.', quotes=["'i was there for the next eighteen months was in bed ... i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely'", "'i was able to live a fairly good life but always tired constantly tired'"]), Code(slug='overexertion-and-relapse-cycle', name='Overexertion leading to relapse and worsening symptoms', description='Participant describes a cycle of pushing herself too hard (e.g. walking excessively) which led to picking up viruses and relapse back to debilitating fatigue forcing retirement and severe activity limitations.', quotes=["'then i started overdoing things again i was walking like ten miles every day ... i picked up a couple of viruses ... i woke up ... i just can't get out of bed i can't do this again'", "'i actually had to retire at that stage and then being retired ... i kept pushing myself pushing myself'"]), Code(slug='relentless-pushing-despite-limitations', name='Relentless pushing through fatigue despite physical limits', description='Despite exhaustion and physical inability to perform basic tasks, participant kept pushing herself to walk and exercise daily, even waking early to get dressed for walking before breakfast, leading to further energy depletion.', quotes=["'i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes ... were in the bathroom ... i just went walking i'd be back by seven eight nine o'clock'", "'then i couldn't really do anything for myself ... i had to lie down because i couldn't i didn't have the energy to cook or anything else'"]), Code(slug='realization-to-accept-lifestyle-changes', name='Realization and acceptance of necessary lifestyle changes', description='Participant early on did not accept diagnosis fully, maintained denial to an extent, but later realized she needed to make significant lifestyle changes to manage her illness rather than hoping to return to previous activity levels.', quotes=["'i'm not going to give into it but i am going to have to make life changes ... my life is going to have to change from that point of view'", "'part of it was just ignorance be part of it'"]), Code(slug='brain-retraining-as-a-recovery-path', name='Embracing brain retraining as a key to recovery', description="Initial skepticism toward brain retraining shifted to acceptance after understanding it addressed body’s protective response and mental 'fight or flight' mode, leading to participation in program and positive initial results within two weeks.", quotes=["'my first reaction was oh no raylan no when do you start telling me it's all on my brain'", "'when he explaining ... your body has switched down some of the genes ... you're stuck in this fight too much ... it just started making sense'", "'i contacted jason and went onto his program because it actually really made sense'"]), Code(slug='learning-boundaries-to-manage-energy', name='Learning to set boundaries to manage energy and avoid overcommitment', description='Participant emphasizes importance of setting personal boundaries like letting phone calls go to voicemail to prevent energy drain and managing social demands, as well as self-monitoring to stop before reaching exhaustion.', quotes=["'if my phone rings i let it go to voicemail so i can deal with it when i want to'", "'learning boundaries the hardest for me was learning boundaries'"]), Code(slug='difficulty-with-relaxation-and-rest', name='Difficulty with relaxation and understanding true rest', description="Participant struggles with relaxation practices like meditation and acknowledges need to retrain herself to understand and accept 'real rest' familiar to healthy individuals but challenging for her to implement consistently.", quotes=["'i'm not good at relaxing ... people say do meditation and this meditation is something i just ... struggled with it'", "'now i make myself every day lay down and take a nap or do some meditation ... i'm like real rest'"]), Code(slug='frustration-with-misunderstanding-by-others', name='Frustration and occasional anger toward others’ misunderstanding of illness', description='Participant feels annoyed and flares up when people minimize or misunderstand her illness or recovery, particularly those who never had the illness or who judge her lifestyle choices, emphasizing emotional toll of misunderstanding.', quotes=["'when people say silly things sometimes ... i can flare up'", "'i know what i've been through ... when somebody minimizes it you can think no'"]), Code(slug='maintaining-hope-and-positivity-despite-chronic-illness', name='Maintaining hope and positivity despite chronic illness challenges', description='Participant highlights her positive and obstinate personality as key factors in her refusal to accept permanent disability and her sustained belief in recovery and improvement despite long-term severe illness.', quotes=["'i'm just a very positive person i think i'm also obstinate'", "'never ever felt ... i was almost like in denial'"]), Code(slug='self-awareness-to-avoid-overexertion', name='Developing self-awareness to avoid overexertion and manage symptoms', description='Participant stresses importance of listening to body signals, recognizing triggers, and adjusting activities in timely fashion to prevent relapse and maintain health improvements.', quotes=["'i've learnt to listen to myself listen to my body ... work out what my triggers are'", "'i can stop myself before i actually get to the stage where i'm really pushing pushing boundaries'"])] codes=[Code(slug='holistic-recovery-focus-mecfs', name='Focusing on holistic recovery instead of individual symptoms', description='Participants described the importance of focusing on overall body support and holistic healing in managing MECFS rather than trying to treat each symptom individually. Trying to treat isolated symptoms was seen as overwhelming and ineffective, while a comprehensive approach contributed to gradual recovery.', quotes=['...my recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole...', '...targeting the specific symptoms was never healing them in my experience...', '...i pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone...']), Code(slug='symptom-comparison-limitations', name='Desire for symptom comparison but finding it unhelpful', description='Participants expressed wanting to compare their symptoms with others to find reassurance or hopeful signs of recovery, but found this approach often unhelpful or even misleading. They noted that MECFS symptoms vary widely across individuals, making direct symptom comparisons unproductive and potentially discouraging.', quotes=["...people want to compare their symptoms against mine... to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope...", "...if someone is sizing up their illness against my illness and it doesn't match exactly... that means that they do not have a chance of recovering...", "...don't get too caught up on comparing symptoms... scanning information for what were their test results... it probably won't help you personally..."]), Code(slug='symptom-management-as-palliation-not-cure', name='Using symptom management mainly for comfort rather than recovery', description='Participants described symptom management during MECFS as largely palliative—to ease discomfort—not a path to cure. Painkillers, sedatives, and other symptom treatments helped manage the suffering temporarily but did not address the underlying illness, which required a broader healing strategy.', quotes=['...symptom management that i did was more palliative and not so much about recovery...', '...if i had pain i might take painkillers or if i was having really bad problems with sleeping... i might go see my doctor and get some prescription sedatives...', '...targeting the specific symptoms was never healing them in my experience...']), Code(slug='need-for-personalized-recovery-plans', name="Need to tailor recovery plans individually to each person's lifestyle and journey", description="Participants highlighted the importance of creating personalized recovery plans tailored to each individual's unique symptoms, lifestyle, and disease experience. Recovery methods that worked for one person might not work for another, and pacing and treatments should be adapted accordingly.", quotes=["...somebody's recovery plan and them selecting the things they want to try needs to be tailored as well...", '...pacing has to be tailored individually for a particular person because their life is so different...', '...look at your own life like a scientist without freaking out about everything...']), Code(slug='frustration-with-symptom-focused-help-seeking', name='Frustration and disappointment from focusing on symptom-specific fixes', description='Participants shared feelings of desperation, frustration, and disillusionment from seeking specific symptom fixes through extensive research, treatments, and comparisons. Many attempts, including costly and risky interventions, failed to provide holistic healing, leading to emotional exhaustion and the need to find alternative strategies.', quotes=['...i spent thousands of hours googling my symptoms...', '...this led me to spend thousands of dollars... i almost poisoning myself by buying organic elderberries...', "...i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one..."]), Code(slug='emotional-boundaries-around-symptom-discussion', name='Setting emotional boundaries around discussing past symptoms', description='Participants expressed the need to set boundaries around conversations about symptoms, including avoiding one-on-one symptom troubleshooting. Sharing their recovery stories was positive but revisiting symptoms was traumatic and could be overwhelming, necessitating limits to preserve well-being.', quotes=['...i now have boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either...', "...writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there...", '...consider that people who share their stories are still human and it might still be fresh their challenges on their journey...'])] codes=[Code(slug='walking-miracle-gratitude-for-life-38', name='Walking miracle gratitude for life after chronic illness', description='This code captures the deep appreciation and awe the participant feels about living a life they once only dreamed of due to recovering from chronic illness. They describe moments of enjoying life with childlike wonder and being grateful each day despite small setbacks.', quotes=["I'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible", "this joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes", "It's like being like when you watch a six year old wandering through the world ... these new eyes where you just get to almost be childlike again"]), Code(slug='difficulty-relating-to-healthy-friends-81', name='Difficulty relating to healthy friends post illness', description='The participant experiences detachment and struggle maintaining friendships with physically healthy friends who complain about their lives. They find it hard to relate to people who seem to take their health for granted and have difficulty understanding those who choose not to engage in activities like working out, which the participant once loved but had to give up.', quotes=["It is hard though to have friends who've never been through it ... and they complain about their lives and i just feel such a detachment sometimes", "Sometimes it's hard for me to be their friend now because I'm like you have it all", 'I really struggle with people who seem physically able to go to the gym but just choose not to', "I would give anything to (work out) because i love working out so that's one of my things that i really miss"]), Code(slug='diagnosis-delay-and-misdiagnosis-60', name='Frustration with delayed diagnosis and misdiagnosis', description="The participant recounts the challenges in receiving an accurate diagnosis. Initially diagnosed with fibromyalgia, their fatigue symptoms were overlooked which delayed appropriate treatment. They express frustration with the medical system's lack of understanding and care for their chronic fatigue symptoms over many years.", quotes=['I was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued', "no one would even really treat it i don't think they really what to do", 'It took a while before i even got the chronic fatigue diagnosis but no one would even really treat it for many years']), Code(slug='self-advocacy-for-healthcare-72', name='Self advocacy and research to access better healthcare', description='The participant took an active role in managing their health by rehabilitating themselves, researching doctors, and eventually moving to access better medical care. They found a nurse practitioner who performed comprehensive blood work and helped identify underlying infections. This proactive approach was crucial for their eventual diagnosis and treatment plan.', quotes=['I kept rehabilitate myself ... researching doctors researching as much as i could', "Eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors", 'She was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that']), Code(slug='genetic-condition-discovery-and-treatment-75', name='Discovery and treatment of genetic mitochondrial disease', description='The participant was diagnosed with a rare mitochondrial disease through full genome testing. This diagnosis explained their inability to fight infections and fatigue. Treatment included a mitochondrial cocktail which helped their body produce mitochondria and regain strength to combat infections, marking a turning point in their recovery.', quotes=['I did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven', "He put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections", 'By him supplementing and boosting my mitochondria i could now fight the infections']), Code(slug='drastic-lifestyle-changes-for-recovery-81', name='Drastic lifestyle changes including diet and environment for recovery', description='The participant emphasizes the importance of significant lifestyle modifications for healing including an elimination diet, gradual movement rehabilitation, and removing environmental toxins. Specific dietary changes involved cutting out dairy, gluten, sugar, and nightshades, which were once inflammatory but sometimes reintroduced gradually.', quotes=['I had to dramatically change my diet ... use food as medicine as a mindset', 'I removed all toxic ingredients immunotoxic i water filtration system on my house', 'Dairy gluten and sugar were main offenders and nightshades bothered me for a while']), Code(slug='overcoming-sugar-addiction-for-healing-56', name='Overcoming intense sugar addiction to support healing', description='The participant describes an intense physical addiction to sugar that disrupted their health and sleep patterns. Through gut healing and probiotics, cravings diminished, allowing them to develop a healthier relationship with food and regain control over their eating habits, marking an important step in recovery.', quotes=['Sugar was a massive one for me and sugar was a tough one for me ... i clearly had a physical addiction', 'I would get up in the middle of the night every single night and eat sugar', 'Once my body started healing the cravings went away']), Code(slug='movement-therapy-as-gentle-rehab-63', name='Movement therapy as gentle rehabilitation rather than exercise', description='The participant highlights the importance of very gradual and gentle movement therapy rather than typical exercise. They emphasize the challenges of balancing activity and rest in chronic fatigue syndrome, noting that even a few minutes of movement can be critical for oxygenation and lymphatic flow while avoiding pushing to the point of relapse.', quotes=['I had to gradually increase my ability to move', 'My exercise program was so small you know it was one to two minutes a day and in the beginning not even every single day', 'I couldn’t rest my way out of this i couldn’t just lay in bed or lay on the couch all day']), Code(slug='psychological-impact-and-growth-from-illness-80', name='Psychological impact and personal growth from chronic illness experience', description='The participant reflects on how chronic illness fundamentally changed their identity, values, and spirituality. They describe feelings of humility, acceptance, and deeper self-worth beyond professional achievements. The illness brought perspective, spiritual growth, gratitude, and a renewed appreciation for life and relationships.', quotes=['It humbled me changed me i maybe was prideful before i wouldn’t say i had a spirituality before', 'I had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that', 'this illness catapults our growth and puts us in a better direction']), Code(slug='fear-and-anxiety-during-pregnancy-after-illness-64', name='Fear and anxiety about pregnancy symptoms being illness relapse', description='The participant shares the anxiety and uncertainty during pregnancy about whether normal pregnancy symptoms like fatigue and headaches signal illness relapse. They learn to differentiate normal pregnancy experiences from chronic illness symptoms, practicing self-compassion and cautious optimism about their health journey.', quotes=["I keep reminding myself these are normal symptoms it's triggering sometimes to be like is this normal fatigue or is this going back", 'I keep reminding myself no it’s normal to have headaches when you’re pregnant it’s normal to feel tired', 'It has been quite a journey i keep reminding myself sometimes']), Code(slug='hope-and-positivity-in-chronic-illness-recovery-57', name='Hope and positivity through seeing others recover from chronic illness', description='The participant expresses how seeing recovery stories from others provides essential hope and motivation for their own healing journey. They highlight the loneliness and despair without such examples and stress the importance of community and shared experiences in sustaining perseverance through chronic illness.', quotes=["It's so nice to see so many people that are getting past these things", 'I remember when i first got sick i was trying to find recovery stories and i just couldn’t find any', "People start reaching out to me it's crazy like hey so nice to meet you you recovered as well"]), Code(slug='self-empowerment-through-knowledge-and-faith-64', name='Self empowerment through knowledge acquisition and faith in recovery', description="The participant credits their recovery journey to extensive self-education about their condition combined with their faith and spiritual trust. They emphasize the importance of trusting the healing process and rejecting limiting prognoses, comparing learning about illness to earning a 'bachelor’s degree' in chronic illness.", quotes=['I would just tell myself to trust that process', 'I had to go through all those years of research and learning', 'It was like getting a bachelor’s degree in chronic illness', 'You cannot limit a limitless guy'])] codes=[Code(slug='scary-and-confusing-early-illness-experience', name='Scary and confusing early illness experience', description='Participant describes the initial onset of chronic fatigue as confusing, frightening, and strange with symptoms that were hard to understand and manage. She was overwhelmed by sudden health decline and had to leave university, indicating a disruptive and scary period.', quotes=["i just didn't feel well at all... felt a bit fluy felt a bit strange felt a bit scared because it felt really weird", "i didn't know what was going on", "it was a really scary time definitely a time that i feel like i've grieved and worked with as i healed"]), Code(slug='feeling-isolated-due-to-illness', name='Feeling isolated due to illness', description='Participant felt isolated because she had to return home and was separated from her friends who were still attending university, leading to feelings of loneliness with limited social support beyond family.', quotes=["all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family", 'it was a very tough time']), Code(slug='rejection-of-depression-diagnosis-and-emotional-awareness', name='Rejection of depression diagnosis and emotional awareness', description="Participant rejected doctors' initial diagnosis of depression as the sole cause, sensing a deeper underlying physical illness despite emotional challenges and some depressive feelings related to her illness.", quotes=['one of the first doctors said she just thought i was depressed that was it', "i knew it wasn't just depression i knew there was emotion about feeling unwell"]), Code(slug='hope-from-meditation-and-yoga-practices', name='Hope from meditation and yoga practices', description='Early engagement with meditation, yoga, and breath work brought short-lived improvements, offering participant moments of hope and relief, though benefits were often temporary and inconsistent over long recovery.', quotes=['i thought i did think quite early on well perhaps meditation and yoga can help me heal', 'doing the alternate nostril breathing and noticing i felt different after doing it', "sometimes i'd notice i felt considerably better after doing one"]), Code(slug='desperation-leads-to-trying-various-alternative-therapies', name='Desperation leads to trying various alternative therapies', description='Participant pursued numerous alternative therapies out of desperation including acupuncture, reiki, nutrition therapy, and colon hydrotherapy, often with limited or mixed success, reflecting urgent search for a cure.', quotes=["i'd go for reiki and i'd go for this and i go for that", 'i even flew to america...to work with a healer', 'just loads of things i was i was so desperate to be well']), Code(slug='realization-of-suppressed-anger-and-unresolved-trauma', name='Realization of suppressed anger and unresolved trauma', description='Participant identified a deep pattern of suppressing anger and unreleased trauma impacting her recovery, acknowledging emotional blocks and the role of unresolved feelings in her physical symptoms.', quotes=["i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there", 'one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs']), Code(slug='mind-body-connection-and-trauma-understanding', name='Mind-body connection and trauma understanding', description='Participant found significant healing through acknowledging the mind-body link, understanding symptoms as manifestations of trauma such as freeze responses, and exploring emotional triggers underlying physical states.', quotes=['it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom', 'a lot of it was the impact of trauma on my system manifesting physically like a freeze response', 'started to really understand the mind body connection']), Code(slug='learning-authentic-self-expression-and-setting-boundaries', name='Learning authentic self-expression and setting boundaries', description='Recovery involved learning to express authentic emotions and needs without fear of upsetting others, using communication skills like non-violent communication to balance self-care and relationships.', quotes=['learning to be more myself more authentic', 'learning non violent communication... a way that i could communicate my feelings without it also being too much for someone else', "it's okay to have needs"]), Code(slug='spiritual-experience-as-part-of-healing-journey', name='Spiritual experience as part of healing journey', description='Spiritual awakening, meditation, and mystical experiences were deeply meaningful but sometimes destabilizing aspects of the recovery journey, requiring learning to balance spiritual insights with daily functioning.', quotes=['i had a kundalini or spiritual some kind of spiritual awakening', 'sometimes i felt like i left my body and i was like connecting with the whole universe', 'i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way']), Code(slug='ongoing-self-care-and-regulation-post-recovery', name='Ongoing self-care and regulation post recovery', description='Even years after recovery, participant still needed to manage emotional and trauma-related symptoms with self-regulation strategies like nature exposure and therapeutic work to maintain balance and well-being.', quotes=['i did have periodically sort of what i would now describe as trauma type symptoms', "i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature", 'that can still happen today but not to the extent it was']), Code(slug='career-shift-driven-by-healing-experience', name='Career shift driven by healing experience', description="Participant's prolonged healing journey influenced her career choice toward coaching and therapeutic work, integrating personal recovery insights into professional roles and continuous learning.", quotes=["i've done lots of different kinds of therapeutic and coaching trainings", 'been working in this field myself nearly twenty years', 'i do keep up quite a few of the practices that support me to heal and new practices']), Code(slug='recognizing-familial-and-ancestral-trauma-impact-on-health', name='Recognizing familial and ancestral trauma impact on health', description='Participant highlights the role of ancestral and family line trauma influencing illness patterns, recognizing wider systemic and generational factors contributing to chronic fatigue symptoms.', quotes=["a lot of my trauma wasn't necessarily personal but was ancestral... took on from my family line", 'sometimes... an illness in one person might not be the root but a wider family system issue'])] codes=[Code(slug='trauma-led-health-crisis', name='Trauma leading to sudden health crisis and exhaustion', description='Participant describes a traumatic sexual assault and subsequent intense physical illness (urinary tract infection during long flight) that triggered sudden, severe exhaustion and ME/CFS symptoms such as insomnia, brain fog, and digestive issues lasting for years.', quotes=["i was sexually assaulted and that led to a really grueling urinary tract infection... whole system just kind of blacked out... i just went totally kaput i felt like i had the flu twenty four seven... i felt like i couldn't remember the name of... digestive issues... hot flashes and pre menopausal symptoms even though i was so young"]), Code(slug='fear-and-uncertainty-after-diagnosis', name='Fear and uncertainty following chronic fatigue syndrome diagnosis', description='Upon receiving the chronic fatigue syndrome diagnosis, the participant experienced a mix of relief for having an explanation and devastating fear, likening the prognosis to a death or life sentence with no cure and ongoing suffering.', quotes=['you know i was so scared... i remember bawling... it was such a death sentence but in a way a life sentence that i was given that i would have to live with for years', "on the one hand i was relieved to have a diagnosis... on the other hand it was really devastating... a natural path doctor said there's no cure"]), Code(slug='resentment-towards-prescribed-diets', name='Resentment towards restrictive diets imposed in treatment', description='The participant describes feeling misery and resentment towards elimination diets (gluten-free, sugar-free, dairy-free) and restrictions imposed by medical and natural health practitioners that were not collaboratively chosen and felt imposed rather than empowering.', quotes=["it was like not only are you totally miserable but we're going to take away anything you enjoy eating", "i felt like it was being done to me... actually he said you know what i think that's perpetuating the trauma", "there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing"]), Code(slug='regaining-agency-in-healing', name='Regaining personal agency and control in healing journey', description='Participant highlights the importance of reclaiming personal power and actively collaborating in their healing process, as opposed to passively following medical instructions, which increased resentment and hindered healing progress.', quotes=['at some point i have to regain my agency and my power and my collaboration in my healing', 'i started realizing with diet and everything else... otherwise i was resenting it', "someone sees me and i didn't even know that's how i felt"]), Code(slug='mental-peace-despite-physical-symptoms', name='Experiencing mental peace while symptoms persist', description='Despite ongoing severe physical symptoms, participant describes achieving a mental state of peace and nonresistance through meditation and spiritual connection, observing symptoms without emotional struggle, which aided emotional coping and eventual recovery progress.', quotes=["there was this internal state of nonresistance or peace... and it really wasn't something i tried to do... it just kind of happened", 'i was kind of watching the symptoms but felt peace', 'i really started meditating and practicing yoga and that sense of spiritual connection really helped']), Code(slug='brain-based-explanation-for-fatigue-symptoms', name='Adopting brain and nervous system explanation for ME/CFS symptoms', description="Learning that symptoms are perpetuated by brain and nervous system's stress response and not directly by viruses or physical damage gave participant hope and understanding, shifting from feeling helpless to empowered to calm the nervous system.", quotes=['she explained all these viruses were suppressing the immune system... but it was how her brain and nervous system were processing stress', "she said 'you're not sick, you're stressed, your system is stuck in this pattern'", 'the brain generates pain... fatigue because it senses danger... danger can be psychological as well as physical']), Code(slug='self-compassion-supporting-recovery', name='Cultivating self-compassion to manage symptoms and aid recovery', description='Participant emphasizes that adopting self-compassion and kindness toward oneself reduces self-criticism that otherwise triggers stress and perpetuates symptoms, enabling more effective emotional regulation and eventual physical improvement.', quotes=['self criticism actually does activate the danger alarm in the brain... so it can feed into symptoms', "i just talk to myself in a compassionate way... i'm so sorry... what do you want or need right now", 'to realize having compassion on ourselves is helpful and can soften the blow']), Code(slug='impact-of-personality-on-symptom-perpetuation', name='Role of personality traits like perfectionism in illness experience', description='Perfectionism, people-pleasing, conscientiousness and holding in emotions were discussed as personality traits common in those with ME/CFS, contributing to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.', quotes=['perfectionist check, people pleasers check... really conscientious, hard driving', "holding the emotions... it's kind of like a pressure cooker", 'people who get cfs are really nice people but they hold in emotions']), Code(slug='importance-of-emotional-processing', name='Acknowledging and processing emotions as key to recovery', description='Participant shares therapeutic practices like journaling and psychotherapy that helped them express anger, grief, and trauma, releasing emotional pressure that contributed to nervous system hypervigilance and symptom worsening.', quotes=['some psychotherapy was helpful... talk through griefs', 'i did some journaling... just to get out frustration i was too nice to say to anyone', 'journaling your anger... bottled up anger can be very harmful']), Code(slug='validation-and-hope-from-connection', name='Finding validation and hope through empathetic connection', description='Talking with someone who truly understood the illness experience and explained the brain-based mechanism provided a critical moment of validation and hope, leading to a spontaneous increase in energy and belief in recovery.', quotes=['she cared a lot... spent three hours on the phone with me', 'i felt like i finally heard the truth... it gave me hope', 'after that conversation i got up and ran around the block like i had not ran in thirteen years'])] codes=[Code(slug='energy-loss-and-fatigue-in-cfs-long-covid', name='Energy loss and fatigue reducing daily activity', description='Participant experienced a noticeable drop in energy and motivation to engage in usual activities, leading to extended periods of rest and physical symptoms like canker sores, reflecting the debilitating impact of CFS/long COVID on daily life.', quotes=["...i just started to get really tired and i didn't have the motivation to go out and do as many activities...", '...laying in bed i would get these canker sores and just overall not feeling the best']), Code(slug='frustration-of-inconclusive-medical-tests', name='Frustration from inconclusive medical investigations', description='Participant felt frustration and uncertainty when medical tests showed normal results despite ongoing symptoms, leading to self-doubt about the origin of symptoms and exploration of mental health explanations.', quotes=['...i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work...', '...thought maybe it was something mentally that was causing this']), Code(slug='initial-skepticism-of-brain-retraining-technique', name='Initial skepticism towards brain retraining techniques', description='Participant was initially doubtful about the efficacy of brain retraining and hypnosis-related methods but committed to the program and found these techniques effective for symptom management and anxiety reduction.', quotes=['...in the beginning i was a little skeptical because the program does have like a hypnosis type of effect...', '...once i really committed to learning the program it really made a difference']), Code(slug='importance-of-mental-stamina-for-active-recovery', name='Importance of mental stamina for physical activity recovery', description='Participant emphasized the growth in mental stamina and positive mindset as critical to progressing from basic functioning to running a 10k and training for a marathon, showing the mental aspects integral to physical recovery.', quotes=["...before i don't think i would have had the mental stamina to do that...", '...now i just have that positive affirmations and changing the way of my mindset from fix to growth...']), Code(slug='valuing-supportive-encouragement-in-recovery', name='Valuing supportive and personal encouragement during recovery', description='Participant highlighted how personalized encouragement and belief from program coach Jason boosted motivation and aided recovery, illustrating the importance of personal connection in healing journeys.', quotes=["...he would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you're doing great...", "...it's just great having someone who believes in you that much..."]), Code(slug='developing-empowering-self-statements', name='Developing empowering self-statements to combat anxiety', description='Participant learned to replace disempowering anxiety statements with growth-oriented affirmations, facilitating a more positive and hopeful mindset conducive to ongoing recovery and emotional resilience.', quotes=["...i didn't realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better...", "...that's more of a journey rather than oh i'm stuck at this state of anxiety..."]), Code(slug='recognizing-the-journey-of-recovery-not-a-fix', name='Recognizing recovery as a journey, not a fixed state', description='Participant expressed understanding that recovery involves ongoing management rather than complete absence of symptoms, using tools to address fluctuations and maintain progress without fear.', quotes=["...i have now these tools to fix that so obviously you know life is stressful i'm still going to have some anxious moments but i can refocus and use these tools...", "...you got this and it's a journey so can't just keep comparing yourself to where you've been..."])] codes=[Code(slug='long-covid-frustration-and-isolation', name='Feeling frustrated and isolated due to long COVID limitations', description='Participants express frustration with the ongoing symptoms and limitations imposed by long COVID, highlighting feelings of isolation and disconnection from their former healthy selves and social life. This includes struggles with physical and cognitive impairments and the emotional toll of not being understood.', quotes=['...I just feel so drained all the time, like I used to be so active and now I can barely manage a short walk...', "...people don't see the struggle you go through every day, it makes you feel very alone...", '...it’s frustrating because you want to get better but the symptoms just keep dragging you down...']), Code(slug='desire-for-understanding-and-validation', name='Desire for understanding and validation from others', description='Participants highlight a strong need for others to acknowledge and believe their experience with long COVID and ME/CFS, as they often face skepticism or misunderstanding. This recognition is crucial for emotional support and reducing the stigma they encounter.', quotes=['...sometimes it feels like people think it’s all in your head...', '...I just want doctors and my family to really understand what I’m going through...', '...validation would mean the world because it proves that I’m not making this up...']), Code(slug='need-to-regain-physical-energy-and-function', name='Need to regain physical energy and return to normal function', description='A consistent desire to regain lost physical energy and resume activities that were previously routine is expressed. Participants describe longing to be able to do simple physical tasks, exercise, and engage in social and work activities without debilitating fatigue.', quotes=['...if I could just get some of my energy back, I’d feel like myself again...', '...I miss being able to just go for a jog or play with my kids without getting exhausted...', '...the fatigue is so overwhelming that even making a meal feels like climbing a mountain...']), Code(slug='search-for-effective-treatment-and-cures', name='Search for effective treatment and cures for symptom relief', description='Participants discuss their ongoing search for treatments or interventions that can bring relief from symptoms or lead to recovery. This includes frustration at the lack of clear treatments and the trial and error of various therapies.', quotes=['...I’ve tried so many treatments, but nothing seems to really work...', '...it’s heartbreaking to not find anything that helps the pain or fatigue...', '...I keep hoping for a cure that will help me move on with my life...']), Code(slug='coping-with-identity-changes', name='Coping with changes to identity and sense of self', description='Participants reflect on the impact the illness has had on their identity and sense of self, expressing a mourning for their previous healthy self and struggling with the new limitations and changed roles in relationships and life.', quotes=['...I don’t recognize the person I am now compared to before...', '...it’s hard to accept that I can’t do what I used to do...', '...sometimes I feel like I’ve lost who I was...'])] codes=[Code(slug='anger-fight-flight-physiology-chronic-pain', name='Anger as fight or flight physiology driving chronic pain', description='Participants describe anger not as a psychological issue but as a physiological survival response generated by fight or flight sensations in the body. This intense physiological arousal leads to chronic pain and symptoms that are deeply wired in their nervous system, making them uncontrollable by conscious mind alone.', quotes=["the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight", 'anger and anxiety are physiological survival responses that we have no control over zero', 'anger and anxiety are gifts i mean how you survive without anger and anxiety']), Code(slug='chronic-pain-neuroplasticity-memory-pain-circuits', name='Chronic pain as embedded memory in neuroplastic pain circuits', description="Chronic pain is explained as an embedded memory in the brain's pain circuits that cannot be erased. Participants feel their pain persists because the brain memorizes the pain experience permanently, similar to phantom limb pain. Fighting the pain reinforces these circuits, while acceptance and new living patterns enable transcendence and symptom reduction.", quotes=['the pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone', 'the more you try to fight it and solve it the more you reinforce it', "you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain"]), Code(slug='role-of-unconscious-brain-in-survival-and-pain', name='Unconscious brain drives survival responses and chronic symptoms', description='Participants express how the unconscious brain processes millions of bits of information per second to keep them alive, without needing the conscious brain. Chronic symptoms arise from unconscious physiological threat states that the conscious brain struggles to control, explaining difficulty in managing chronic illness through conscious effort alone.', quotes=['the unconscious brain keeps you alive we do not need conscious brain to stay alive', 'the unconscious brain is eleven million bits of your patient per second the conscious brain is forty', "you can't control it and so it's like trying to drag stir with handbrakes"]), Code(slug='letting-go-fighting-pain-key-to-healing', name='Letting go of fighting pain as crucial to healing process', description='Participants describe a shift from actively trying to fix or fight their pain towards letting go and accepting it as key to healing. This change in relationship towards pain reduces reinforcement of pain circuits, enables separation from pain, and supports creating new, pain-free neural pathways through living life on their own terms.', quotes=["the hardest part of this project by far is people can't help but try to fix themselves", 'you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain', "the pain she or you're here as you start getting on with your life the way you want to your terms that's the solution"]), Code(slug='threat-physiology-explains-chronic-symptoms', name='Threat physiology underlies chronic mental and physical symptoms', description='Participants reveal that chronic symptoms, including pain, anxiety, depression and other diseases, stem from sustained threat physiology involving hyperactive nervous system responses and inflammation. This state breaks down the body over time and maintains symptoms, emphasizing the need to calm the physiology rather than solely treat symptoms.', quotes=['every chronic disease with few exceptions are related to chronic stress', 'the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really', 'chronic fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress']), Code(slug='separation-from-negative-thoughts-in-pain', name='Separating oneself from negative and repetitive thoughts', description='Participants highlight the importance of separating their identity from negative intrusive thoughts and repetitive thought patterns that fuel anxiety and pain. Techniques like expressive writing, mindfulness and cognitive behavioral therapy help create this separation, reducing the physiological arousal that these thoughts cause.', quotes=["separate from the thoughts that's where my friend is conducted behavior therapy comes into play", 'if you work with that much so that separates you from the thoughts not solving them to say thought separation process', 'by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing']), Code(slug='nurturing-joy-for-chronic-pain-healing', name='Nurturing joy as a vital part of healing journey', description='Participants emphasize nurturing joy through positive experiences, relationships, and mindset as essential for healing chronic pain and symptoms. Joy helps build new neural pathways, counterbalances threat physiology, and supports a flourishing life beyond pain rather than solely focusing on fixing negative symptoms.', quotes=["the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible", "you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing", "you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs"]), Code(slug='importance-of-sleep-diet-exercise-in-nervous-system-calm', name='Importance of sleep diet and exercise for calming nervous system', description='Participants discuss sleep, diet, and exercise as foundational pillars to calm the nervous system and support healing. Lack of sleep contributes directly to chronic pain development, and improving these areas helps regulate physiology, reduce inflammation, and promote regeneration, forming an essential part of recovery processes.', quotes=["if you address sleep is number one people weren't sleeping", 'lack of sleep actually causes chronicle back pain not the way around', 'sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system']), Code(slug='role-of-physiology-over-conscious-control', name="Physiology's dominance over conscious brain in symptom experience", description='Participants relate that physiological responses in the nervous system vastly overpower the conscious brain’s ability to control thoughts or symptoms. Fight or flight states inhibit neocortex functions and cognitive thinking, resulting in automatic reactions and making conscious efforts insufficient to manage symptoms alone.', quotes=["it's about half a million times stronger than your conscious brain", "when you're in fight or flight your highest thinking party or brain the neocortex doesn't work", "by the time you think about it so let's have a thoughts for second"]), Code(slug='skepticism-as-starting-point-for-healing-engagement', name='Using skepticism as a starting point to engage in healing', description='Participants express that skepticism is a natural and valid initial stance for people learning this approach. Encouraging embracing skepticism helps people start the healing journey by connecting with their own experience rather than blind belief, promoting curiosity and gradual learning to shift physiology and symptoms.', quotes=["i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said", "the key is connect to what's in there which is skepticism", 'connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change'])] codes=[Code(slug='book-as-key-to-chronic-pain-recovery', name='Book as key to chronic pain recovery approach', description='The participant found a specific book by Dr. John Sarno pivotal in understanding and recovering from chronic pain and multiple other health issues. This self-help resource resonated deeply with their symptoms and personality, leading to significant healing and influencing their therapeutic career.', quotes=['i found a book by a guy named john sono... my back pain was gone within a few months ... a lot of other health problems i had suffered with for years went away', 'sorrow said that a lot of people could get better just by reading the book', 'the symptoms right the fact that i had always had something really since i was a kid ... it was really resonating', 'the personality characteristics... were so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions']), Code(slug='emotion-focused-therapy-for-pain', name='Emotion-focused therapy as core to pain recovery process', description="Emotion-focused therapy, particularly Intensive Short-Term Dynamic Psychotherapy (ISTDP), is central to the participant's approach to chronic pain recovery. It focuses on safely accessing and processing suppressed emotions, especially anger and rage, which manifest as physical pain.", quotes=['the core of the intervention is this emotion focused approach... all emotions are healthy... we learn to disconnect from these emotions', 'we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain', 'brain pain research shows chronic pain lights up the amygdala which is responsible for emotions anger rage', 'ISTDP therapy allows patients to notice their bodily tension which is often anxiety about feeling anger or rage, helping them process these emotions']), Code(slug='barriers-to-therapy-engagement-and-trust', name='Barriers to engaging with emotion-focused therapy include fear and trust issues', description='The participant acknowledges that many patients struggle with engaging in ISTDP therapy due to fears, defenses, and trust issues. Therapy requires gradual emotional exposure at a tolerable pace to avoid setbacks, with some patients needing more time and support to lower their defenses and benefit.', quotes=["some folks can work through the process very quickly... but others it's more complicated and harder", 'i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions', 'ISTDP is incredibly difficult but supportive... it requires building emotional threshold gradually', 'some people resist because dealing with emotions is hard work, their symptoms can flare up as they engage emotionally']), Code(slug='transformation-in-professional-acceptance', name='Growing acceptance of emotion-focused therapy among medical professionals', description="Over time, there has been significant progress in the medical and professional community's acceptance of emotion-focused therapy for chronic pain, with increased training and referrals. Despite previous stigma, doctors now recognize the scientific support and therapeutic benefits, leading to more integration in treatment.", quotes=['most of the folks that i work with come to me because they know and understand and accept this', "i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work", 'medical schools are starting to have pain curriculum now and look towards scientifically supported approaches', 'doctors call me to see patients because there is a growing recognition of this approach']), Code(slug='mindset-shift-needed-for-therapy-acceptance', name='Mindset shift required for accepting therapy as part of recovery', description='Many patients initially see therapy only as coping rather than a true recovery pathway. The participant highlights the need for a paradigm shift from viewing mental health as separate to understanding physical and emotional health integration to accept emotion-focused therapy as a vital part of healing chronic pain.', quotes=['most of us think of our mental health and physical health as two separate things', "addressing your mental health stuff is a nice to have when i was really sick i started going into therapy but it wasn't to make myself get better it was just to help me cope", 'this is such a change in mindset and our understanding to see this as part of their path to getting better']), Code(slug='emotions-understood-as-physical-pain-source', name='Understanding emotions as the source of physical pain', description='The participant explains how emotions, especially those deemed unacceptable or dangerous, are converted into physical symptoms like chronic pain, supported by MRI studies. This understanding validates the psychological origins of pain and the need to address emotions therapeutically rather than focusing solely on structural damage.', quotes=['sometimes we develop strategies to ward off these uncomfortable or dangerous emotions and for chronic pain patients it tends to be physical pain', 'MRI research supports the process of emotions transforming into physical form', 'chronic pain patients brains light up the amygdala which is responsible for emotions like anger and rage', "there's really no very little relationship between structural changes and the pain that you're experiencing"])]
Type: Reduce
Inputs: codes_and_themes_per_chunk
Output type: str
themes=[Theme(name='Experiencing relentless fatigue and energy crashes with post-exertion collapse', description='Participants describe extreme exhaustion where standing up or doing basic activities leads to complete energy drain, necessitating long periods of bed rest and causing severe impact on daily functioning, including being bedridden for months. This persistent fatigue cycles with relapses particularly after overexertion, underscoring the debilitating nature of their conditions.', code_slugs=['persistent-fatigue-and-energy-drain', 'overexertion-and-relapse-cycle', 'relentless-pushing-despite-limitations']), Theme(name='Struggling to accept illness limits while refusing to give up hope', description='Participants reveal a tension between denial and acceptance of chronic illness limitations. They maintain a positive and obstinate mindset, resisting the notion of permanent disability. Despite setbacks and long-term fatigue, they sustain hope, learning lifestyle changes and gradual self-awareness to manage symptoms while holding onto the belief of eventual remission rather than cure.', code_slugs=['realization-to-accept-lifestyle-changes', 'maintaining-hope-and-positivity-despite-chronic-illness', 'self-awareness-to-avoid-overexertion']), Theme(name='Embracing brain retraining programs to regain control and recovery', description="Participants initially skeptical of brain-based recovery methods, come to accept and engage with brain retraining that addresses protective 'fight or flight' responses encoded in the body’s genes. They find validation and structured approaches that enable confidence and early positive signs, with brain retraining experienced as a crucial part of their recovery journey and self-healing process.", code_slugs=['brain-retraining-as-a-recovery-path']), Theme(name='Learning boundaries and managing social demands to conserve energy', description='Participants emphasize the importance of setting clear boundaries to avoid energy depletion, such as letting non-essential calls go to voicemail and managing people-pleasing tendencies. They highlight struggle and growth in learning to say no and delay tasks, balancing social demands with personal health needs to prevent relapse and better manage chronic fatigue symptoms.', code_slugs=['learning-boundaries-to-manage-energy']), Theme(name='Difficulty with genuine rest and retraining habits for meaningful relaxation', description="Participants report difficulty with standard relaxation and meditation practices, struggling to let go and genuinely rest. They describe the challenge of retraining their minds to value and consistently implement 'real rest' like naps or meditation, essential for recovery but alien to ingrained habits and mental states shaped by chronic fatigue.", code_slugs=['difficulty-with-relaxation-and-rest']), Theme(name='Frustration and emotional challenges from others misunderstanding illness and recovery', description='Participants express ongoing emotional struggle when others minimize or fail to understand their illness experience and recovery process. They describe feelings of frustration, flaring up, and limited patience with ignorance or misjudgment, especially from those who never had the illness or who challenge their lifestyle adaptations, revealing a significant social and psychological burden.', code_slugs=['frustration-with-misunderstanding-by-others'])] themes=[Theme(name='Seeking comprehensive healing beyond individual MECFS symptom treatments', description='Participants expressed the importance of a holistic recovery approach, supporting the body as a whole rather than targeting specific symptoms. They found that symptom management provided only palliative relief and was insufficient for healing. Focusing too much on isolated symptoms was overwhelming and not helpful, while a broad, integrated strategy led to gradual overall improvement and resolution of symptoms.', code_slugs=['holistic-recovery-focus-mecfs', 'symptom-management-as-palliation-not-cure']), Theme(name='Feeling frustrated and disillusioned by symptom-specific research and treatments', description='Participants shared feelings of desperation and disappointment from extensively researching specific symptoms and fixes, including costly, risky, and ineffective treatments. They experienced emotional exhaustion after repeated failures to find symptom-specific cures. This led to recognition that a more comprehensive healing strategy was necessary beyond attempting to stop symptoms one-by-one.', code_slugs=['frustration-with-symptom-focused-help-seeking', 'holistic-recovery-focus-mecfs']), Theme(name='Wanting hopeful reassurance through symptom and recovery comparisons but finding it unproductive', description='Participants desired to compare their symptoms and recovery stories with others to find hope and reassurance. However, the wide variability of MECFS symptoms made such comparisons misleading and discouraging. They emphasized the importance of recognizing individual differences and cautioned against overreliance on symptom matching or blood test comparisons to predict recovery chances or treatment success.', code_slugs=['symptom-comparison-limitations']), Theme(name='Needing personalized recovery plans tailored to individual symptoms, lifestyle, and journeys', description='Participants highlighted that recovery from MECFS must be deeply personal, with plans tailored to individuals’ unique symptoms, severity, life circumstances, and experiences. They stressed that pacing and treatments should be customized rather than adopting a one-size-fits-all approach. Building recovery plans based on one’s own body and intuition fosters empowerment and supports more effective healing paths.', code_slugs=['need-for-personalized-recovery-plans']), Theme(name='Setting emotional boundaries to protect well-being when discussing difficult symptoms', description='Participants recognized the emotional toll of revisiting and discussing past symptoms through one-on-one conversations and social media interactions. They emphasized establishing boundaries to avoid overwhelming situations, protect mental health, and preserve personal space. Despite the desire to share recovery stories and receive positive feedback, they found discussions about symptoms often retraumatizing, requiring limits on symptom-focused exchanges.', code_slugs=['emotional-boundaries-around-symptom-discussion'])] themes=[Theme(name='Deep gratitude and awe for renewed life after chronic illness recovery', description='This theme captures the participant\'s overwhelming sense of gratitude and amazement about living a life once only dreamed of due to chronic illness recovery. They describe moments of feeling like a "walking miracle," appreciating life with childlike wonder, and maintaining joy despite setbacks. This theme highlights how the participant values each day as a precious victory and reflects a profound shift in perspective and appreciation for life.', code_slugs=['walking-miracle-gratitude-for-life-38']), Theme(name='Struggle with detachment from healthy friends who take wellness for granted', description='Participants feel a sense of detachment and difficulty relating to friends who have never experienced chronic illness, especially when those friends complain about life or neglect physical health. The participant misses activities like working out and struggles to understand those who are able but unwilling to engage in wellness. This theme reflects the emotional distance and isolation felt in social relationships post-illness recovery.', code_slugs=['difficulty-relating-to-healthy-friends-81']), Theme(name='Frustration over medical misdiagnosis and delayed recognition of chronic fatigue symptoms', description='The participant recounts the prolonged and frustrating journey through misdiagnosis and dismissal by medical professionals, initially diagnosed with fibromyalgia while fatigue symptoms were overlooked. This theme underscores the experience of receiving little help or understanding over many years, contributing to a sense of neglect and uncertainty in the healthcare process.', code_slugs=['diagnosis-delay-and-misdiagnosis-60']), Theme(name='Active self-advocacy and persistence in seeking knowledgeable healthcare providers', description="This theme reflects the participant's proactive efforts to manage their health through self-rehabilitation, researching physicians, relocating for better care, and collaborating with investigative providers. The participant describes working with specialists who carefully examined underlying infections and genetic factors, showing determination and resourcefulness in overcoming healthcare system challenges.", code_slugs=['self-advocacy-for-healthcare-72', 'genetic-condition-discovery-and-treatment-75']), Theme(name='Major lifestyle changes including diet, movement, and toxin avoidance for healing', description='Participants undertake drastic modifications such as elimination diets targeting dairy, gluten, sugar, and nightshades, coupled with gentle movement therapies and removal of environmental toxins. This theme captures the careful, individualized approach to healing through body-focused changes and gradual physical rehabilitation, emphasizing patience and persistence in recovery.', code_slugs=['drastic-lifestyle-changes-for-recovery-81', 'overcoming-sugar-addiction-for-healing-56', 'movement-therapy-as-gentle-rehab-63']), Theme(name='Personal transformation and spiritual growth through chronic illness experience', description='This theme highlights the profound psychological and spiritual shifts participants undergo, including humility, acceptance of help, redefined self-worth beyond career achievements, and a deepened faith. The illness is seen as a catalyst for personal growth, reshaping identity and spirituality, fostering gratitude, and instilling new values about life and relationships.', code_slugs=['psychological-impact-and-growth-from-illness-80', 'self-empowerment-through-knowledge-and-faith-64']), Theme(name='Anxiety and self-compassion in distinguishing pregnancy symptoms from relapse fears', description='Participants describe the anxiety of interpreting pregnancy-related symptoms such as fatigue and headaches within the context of past chronic illness. They emphasize the need to differentiate normal pregnancy experiences from illness relapse, practicing self-compassion and cautious optimism, while acknowledging the triggering nature of these symptoms.', code_slugs=['fear-and-anxiety-during-pregnancy-after-illness-64']), Theme(name='Hope inspired by recovery stories and community connection in chronic illness', description="This theme reflects the vital role of witnessing others' recovery journeys in maintaining hope and motivation. Participants stress the loneliness and despair without such examples, and the importance of shared experiences and community support for sustaining perseverance through the difficult, long recovery process of chronic illness.", code_slugs=['hope-and-positivity-in-chronic-illness-recovery-57'])] themes=[Theme(name='Overwhelming fear and isolation at initial chronic fatigue onset', description='Participants describe the early stages of chronic fatigue as a scary and confusing experience, feeling a bit fluy, strange, and scared. They face emotional challenges, grief and uncertainty as symptoms emerge without clear diagnosis, compounded by isolation from friends and the university environment. The loss of normal activities and social contact leads to a tough, lonely time where only family remains as support.', code_slugs=['scary-and-confusing-early-illness-experience', 'feeling-isolated-due-to-illness']), Theme(name='Struggling with misdiagnosis and longing for real understanding', description='Participants recount early experiences of medical dismissal, such as doctors attributing symptoms solely to depression. They recognize the emotional impact but feel there is more going on physically. This misunderstanding leads to frustration and a strong desire to find real explanations and effective healing approaches beyond conventional medicine.', code_slugs=['rejection-of-depression-diagnosis-and-emotional-awareness']), Theme(name='Clinging to hope through meditation and fragmented relief efforts', description='Engaging in meditation, yoga, breath work, and guided relaxation offers participants temporary relief and moments of feeling better, providing hope that some control over their health is possible. Yet, these benefits are often short-lived and unstable, requiring ongoing effort to find deeper shifts in recovery.', code_slugs=['hope-from-meditation-and-yoga-practices']), Theme(name='Desperation spurs trying diverse alternative therapies seeking cure', description='Out of urgency to recover, participants try multiple alternative therapies such as acupuncture, reiki, nutrition therapy, and even colon hydrotherapy, often with mixed or limited success. This represents a willingness to explore all possible avenues despite invasiveness or skepticism, driven by a deep yearning to reclaim health.', code_slugs=['desperation-leads-to-trying-various-alternative-therapies']), Theme(name='Uncovering and releasing suppressed anger and old trauma for healing', description='Participants identify profound suppression of anger and unresolved trauma as pivotal barriers to recovery. Recognizing patterns of avoiding conflict and holding unexpressed emotions leads to emotional breakthroughs. This process helps participants address the mind-body connection and understand physical symptoms as manifestations of trauma responses, enhancing self-awareness and healing potential.', code_slugs=['realization-of-suppressed-anger-and-unresolved-trauma', 'mind-body-connection-and-trauma-understanding']), Theme(name='Learning to communicate authentically while setting healthy boundaries', description='Recovery journeys involve participants learning how to be authentic in expressing their feelings and needs without fearing upsetting others. Non-violent communication and boundary-setting skills help them balance self-care and relationships, moving from suppression to gentle assertiveness and honoring personal needs.', code_slugs=['learning-authentic-self-expression-and-setting-boundaries']), Theme(name='Integrating profound spiritual awakenings and meditation challenges', description="Spiritual experiences such as kundalini awakening, mystical meditation, and out-of-body sensations play a significant but destabilizing role in participants' recovery. While these moments connect them deeply to the universe and provide meaningful insights, they sometimes interfere with daily functioning, necessitating a balance between spiritual growth and practical life demands.", code_slugs=['spiritual-experience-as-part-of-healing-journey']), Theme(name='Sustained self-care and emotional regulation beyond recovery', description='Even years after initial healing, participants continue to manage emotional, trauma-related, or dissociative symptoms through therapeutic work, nature exposure, and self-regulation techniques. This ongoing effort ensures balance and well-being remains, reflecting an enduring commitment to health maintenance and vigilance against relapse.', code_slugs=['ongoing-self-care-and-regulation-post-recovery']), Theme(name='Healing journey inspires career change into coaching and therapy work', description="The prolonged recovery experience deeply influences participants' career paths, leading them to pursue therapeutic coaching, bodywork, and modalities like internal family systems. They integrate personal healing insights professionally, remaining lifelong learners who apply supportive practices to help others on their health journeys.", code_slugs=['career-shift-driven-by-healing-experience']), Theme(name='Recognizing ancestral trauma’s influence on illness and healing paths', description='Participants acknowledge the impact of ancestral and family lineage trauma on chronic fatigue development and recovery. They observe that illness can be rooted in wider family systems rather than just personal history, gaining awareness of generational health patterns and employing family constellation approaches to understand systemic illness dynamics.', code_slugs=['recognizing-familial-and-ancestral-trauma-impact-on-health'])] themes=[Theme(name='Overwhelming fear and devastation from ME/CFS diagnosis and limited medical support', description="After the participant's diagnosis of chronic fatigue syndrome, they felt terrified and devastated, describing it as a death or life sentence with no known cure. The participant recalls bawling and feeling hopeless when doctors confirmed no cure and a need to live with symptoms, leading to a profound emotional struggle and sense of lost future, despite relief at having a diagnosis to explain their decline.", code_slugs=['fear-and-uncertainty-after-diagnosis']), Theme(name='Frustration and resentment from imposed restrictive diets and treatments lacking personal control', description='The participant experienced misery and resentment towards strict elimination diets and numerous supplements that were recommended by doctors and natural health practitioners without their input. Feeling like these interventions were being done to them rather than with them, the participant felt these measures perpetuated trauma and hindered healing because they lacked agency and were not tailored to their needs or preferences.', code_slugs=['resentment-towards-prescribed-diets', 'regaining-agency-in-healing']), Theme(name='Physical symptoms triggered by trauma and sustained by nervous system hypervigilance and emotional stress', description="The initial trigger for the participant's illness was a traumatic sexual assault followed by infection and physical collapse, causing classic ME/CFS symptoms including 24/7 flu-like exhaustion, insomnia, brain fog, and digestive issues. This theme highlights how unresolved trauma and ongoing psychological stress maintained neurological hypervigilance, perpetuating symptoms through the brain and nervous system's stress responses despite absence of identifiable physical damage.", code_slugs=['trauma-led-health-crisis', 'brain-based-explanation-for-fatigue-symptoms']), Theme(name='Finding mental peace and spiritual connection to endure symptoms and support recovery', description='Despite persistent severe symptoms, the participant attained states of mental peace and nonresistance through meditation, yoga, and spiritual practices. This deep inner calmness and connection to something greater enabled the participant to observe symptoms without emotional turmoil, serving as a vital coping mechanism and foundation for emotional healing over their long recovery journey.', code_slugs=['mental-peace-despite-physical-symptoms']), Theme(name='Healing through emotional processing, self-compassion, and releasing bottled emotions', description='Addressing emotional grief, trauma, and suppressed anger through psychotherapy, journaling, and self-compassion was crucial to the participant’s recovery. Embracing kindness toward oneself softened the blow of symptoms and reduced self-criticism that activated the brain’s danger signals. Expressive writing and emotional release helped alleviate the pressure cooker effect of holding in feelings, allowing nervous system recalibration.', code_slugs=['self-compassion-supporting-recovery', 'importance-of-emotional-processing', 'impact-of-personality-on-symptom-perpetuation']), Theme(name='Validation and hope from empathetic connection and new understanding of illness', description='A pivotal experience was a long conversation with someone who truly understood the illness and explained the brain and nervous system’s role in perpetuating symptoms. This validation from empathetic connection sparked a spontaneous remission and instilled a profound belief in the possibility of recovery. It shifted the participant’s perspective from helplessness to hopeful empowerment by conveying that recovery is possible through calming the nervous system.', code_slugs=['validation-and-hope-from-connection'])] themes=[Theme(name='Experiencing energy loss and frustration from inconclusive medical answers', description='Participant felt a noticeable drop in energy and motivation, describing how fatigue led to extended rest and physical symptoms like canker sores. Despite visiting doctors who confirmed their vitals and blood work as normal, the participant experienced frustration and doubt, exploring mental health as a possible cause, highlighting the emotional uncertainty accompanying unexplained symptoms.', code_slugs=['energy-loss-and-fatigue-in-cfs-long-covid', 'frustration-of-inconclusive-medical-tests']), Theme(name='Initial doubts and subsequent trust in brain retraining healing techniques', description='Participant was initially skeptical about hypnosis and brain retraining methods offered by the program but found commitment to these techniques effective for symptom relief and anxiety management. The journey from doubt to acceptance shows a shift in mindset, embracing unconventional healing that fundamentally changed their approach to recovery.', code_slugs=['initial-skepticism-of-brain-retraining-technique']), Theme(name='Building mental stamina and positive mindset for physical recovery challenges', description='The participant highlighted the importance of developing mental stamina and adopting positive affirmations, enabling progression from basic daily functioning to running 10K races and training for marathons. This growth mindset and empowerment were pivotal in sustaining motivation and embracing physical challenges beyond previous limits.', code_slugs=['importance-of-mental-stamina-for-active-recovery']), Theme(name='Finding motivation through personal encouragement and belief from support', description='Participant valued the personalized, encouraging support they received from their coach, which boosted motivation and belief in recovery despite ongoing challenges. Regular texts and genuine belief from someone invested, even as a stranger, made a meaningful difference in maintaining hope and progress.', code_slugs=['valuing-supportive-encouragement-in-recovery']), Theme(name='Adopting empowering self-talk to transform anxiety into recovery progress', description="The participant discovered replacing disempowering anxiety statements with affirmations like 'I am on my way to getting better' fostered a positive, hopeful mindset. This shift transformed their experience of anxiety from feeling stuck to seeing it as a stage in an ongoing health journey, supporting emotional resilience.", code_slugs=['developing-empowering-self-statements']), Theme(name='Accepting recovery as a continuous journey with tools for setbacks', description='Participant recognized recovery as an ongoing journey rather than a fixed, fully cured state, understanding that life will bring stress and anxious moments. They emphasized having tools to manage symptoms and refocus, cultivating confidence to maintain progress and face fluctuations without fear or discouragement.', code_slugs=['recognizing-the-journey-of-recovery-not-a-fix'])] themes=[Theme(name='Living with isolation and frustration from long COVID symptoms', description="This theme captures participants' feelings of being drained and disconnected due to persistent symptoms that limit physical and social activities. They express frustration with ongoing symptoms that drag them down and the emotional toll of feeling alone because others don't see or understand their daily struggle.", code_slugs=['long-covid-frustration-and-isolation']), Theme(name='Seeking empathy and validation from family, doctors, and society', description='Participants strongly desire recognition and belief in their experiences with long COVID and ME/CFS. They emphasize how validation from doctors, family, and others is crucial to reduce feelings of stigmatization and misunderstanding, providing essential emotional support and helping them feel that their condition is real and acknowledged.', code_slugs=['desire-for-understanding-and-validation']), Theme(name='Yearning to recover physical strength and resume normal activities', description='There is a poignant longing among participants to regain lost physical energy and return to activities they once enjoyed, such as jogging, playing with children, and routine tasks. The overwhelming fatigue makes even simple tasks difficult, and participants express a strong need to feel like themselves by restoring their physical function and vitality.', code_slugs=['need-to-regain-physical-energy-and-function']), Theme(name='Persistent search for treatments that bring relief and hope for cure', description='Participants describe the emotional toll of trying many treatments without success, expressing heartbreak and disappointment. They maintain hope for an effective cure or therapy that will relieve symptoms, stop the pain and fatigue, and allow them to move forward with life beyond their illness.', code_slugs=['search-for-effective-treatment-and-cures']), Theme(name='Struggling with sense of self and identity after illness onset', description="This theme reflects participants' internal conflict as they mourn their healthy pre-illness identity and grapple with new limitations that alter their roles and self-perception. They speak to the difficulty of accepting these changes and feeling like they have lost their former selves amid the chronic illness experience.", code_slugs=['coping-with-identity-changes'])] themes=[Theme(name='Experiencing anger and anxiety as uncontrollable physiological survival responses', description="Participants experience anger and anxiety not as psychological issues but as automatic fight or flight sensations generated by their body. These physiological survival responses drive chronic pain and related symptoms, overpowering conscious control and leading to deep frustration and feeling trapped by their body's intense reactions and threat states.", code_slugs=['anger-fight-flight-physiology-chronic-pain', 'threat-physiology-explains-chronic-symptoms', 'role-of-physiology-over-conscious-control']), Theme(name='Living with chronic pain as a persistent brain-embedded memory and changing the pain relationship', description='Participants perceive chronic pain as an embedded memory circuit in their brain that cannot be erased, similar to phantom limb pain. Fighting this pain reinforces the circuits, but by separating themselves from the pain and accepting it, they begin to transcend the pain and create new neural pathways, enabling them to live on their own terms despite persistent symptoms.', code_slugs=['chronic-pain-neuroplasticity-memory-pain-circuits', 'letting-go-fighting-pain-key-to-healing']), Theme(name='Struggling with repetitive negative thoughts and learning to separate from them to reduce distress', description='Participants face distressing repetitive negative thoughts that fuel anxiety and chronic symptoms. They describe using tools like expressive writing and mindfulness to separate their identity from these thoughts, reducing physiological arousal and suffering. This process is crucial to breaking cycles of mental rigidity and anger that block healing.', code_slugs=['separation-from-negative-thoughts-in-pain']), Theme(name='Finding joy and safety as essential pathways to healing beyond pain and stress', description='Participants emphasize nurturing joy through positive experiences, relationships, and a playful curious attitude to counterbalance threat physiology. They find that embodying safety physiology by managing nervous system stress, prioritizing sleep, diet, and exercise, and interpersonal support creates a state where the body can heal itself and symptoms resolve, enabling a thriving life beyond chronic illness.', code_slugs=['nurturing-joy-for-chronic-pain-healing', 'importance-of-sleep-diet-exercise-in-nervous-system-calm']), Theme(name='Embracing skepticism and curiosity as starting points for holistic healing engagement', description='Participants express that embracing skepticism rather than blind belief is an important initial step. Connecting with one’s doubts encourages curiosity and open-minded learning, which helps people engage in the self-directed skill acquisition needed to calm their physiology, interrupt negative cycles, and progress towards symptom improvement and healing.', code_slugs=['skepticism-as-starting-point-for-healing-engagement']), Theme(name='Understanding unconscious brain dominance in managing chronic symptoms and survival', description='Participants highlight how the unconscious brain processes millions of bits of sensory information per second to maintain survival and drive responses that the conscious brain cannot override. This explains the difficulty in controlling chronic symptoms through willpower alone, as unconscious physiological threat states dominate symptom experience and reactions.', code_slugs=['role-of-unconscious-brain-in-survival-and-pain'])] themes=[Theme(name='Discovering hope and healing through transformative recovery books', description="Participants express a profound sense of hope and inspiration upon discovering pivotal recovery books, such as Dr. John Sarno's work, that deeply resonate with their symptoms and personality traits. These books not only helped them overcome chronic pain and other health issues but also shaped their therapeutic journeys, offering an accessible entry point to understanding their complex experiences and fostering meaningful change.", code_slugs=['book-as-key-to-chronic-pain-recovery']), Theme(name='Experiencing core healing by accessing and processing suppressed emotions', description='Participants describe their emotional healing journey centered on emotion-focused therapy, particularly ISTDP, which enables them to safely access, experience, and process suppressed emotions like anger and rage. This process reveals how physical pain manifests from blocked emotions, helping them develop new emotional capacities and gradually dismantle defense mechanisms, ultimately leading to physical and emotional relief.', code_slugs=['emotion-focused-therapy-for-pain', 'emotions-understood-as-physical-pain-source']), Theme(name='Facing challenges of fear and distrust in engaging deeply with therapy', description='Participants share the difficulties in engaging with intensive emotion-focused therapy, noting fears, defensive behaviors, and trust issues that create barriers. They emphasize the slow and supportive process needed to expand their emotional thresholds while avoiding setbacks, highlighting the hard work involved in gradually confronting painful emotions that are integral to recovering from chronic pain.', code_slugs=['barriers-to-therapy-engagement-and-trust']), Theme(name='Feeling validated and hopeful from growing medical recognition of pain therapy', description='Participants feel encouraged and validated as emotion-focused therapy gains acceptance among medical professionals, contrasting with earlier stigma. They describe increased doctor referrals, training opportunities, and scientific research backing, which fosters hope for broader systemic change and better integration of effective approaches into mainstream medical practice for chronic pain and related conditions.', code_slugs=['transformation-in-professional-acceptance']), Theme(name='Adapting mindset to accept therapy as essential part of physical healing', description='Participants reflect on the difficult yet crucial mental shift from viewing therapy as mere coping to recognizing it as an essential healing route. This shift involves breaking down the false divide between mental and physical health and embracing an integrated approach. They recount how this changed perspective enables them to commit more fully to emotion-focused treatments as pathways to recovery beyond just symptom management.', code_slugs=['mindset-shift-needed-for-therapy-acceptance'])]
Type: Transform
You are a: Experienced qual researcher None We are now going to rationalise the set of codes identified across multiple documents. We will consolidate into a single CodeList. ## Preliminary codescodes=[Code(slug='persistent-fatigue-and-energy-drain', name='Persistent fatigue and energy drain on standing', description='Participant describes extreme exhaustion and a complete drain of energy when trying to stand after lying down, leading to being bedridden for 18 months. This fatigue persisted with partial recovery but never complete, impacting daily functioning for many years.', quotes=["'i was there for the next eighteen months was in bed ... i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely'", "'i was able to live a fairly good life but always tired constantly tired'"]), Code(slug='overexertion-and-relapse-cycle', name='Overexertion leading to relapse and worsening symptoms', description='Participant describes a cycle of pushing herself too hard (e.g. walking excessively) which led to picking up viruses and relapse back to debilitating fatigue forcing retirement and severe activity limitations.', quotes=["'then i started overdoing things again i was walking like ten miles every day ... i picked up a couple of viruses ... i woke up ... i just can't get out of bed i can't do this again'", "'i actually had to retire at that stage and then being retired ... i kept pushing myself pushing myself'"]), Code(slug='relentless-pushing-despite-limitations', name='Relentless pushing through fatigue despite physical limits', description='Despite exhaustion and physical inability to perform basic tasks, participant kept pushing herself to walk and exercise daily, even waking early to get dressed for walking before breakfast, leading to further energy depletion.', quotes=["'i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes ... were in the bathroom ... i just went walking i'd be back by seven eight nine o'clock'", "'then i couldn't really do anything for myself ... i had to lie down because i couldn't i didn't have the energy to cook or anything else'"]), Code(slug='realization-to-accept-lifestyle-changes', name='Realization and acceptance of necessary lifestyle changes', description='Participant early on did not accept diagnosis fully, maintained denial to an extent, but later realized she needed to make significant lifestyle changes to manage her illness rather than hoping to return to previous activity levels.', quotes=["'i'm not going to give into it but i am going to have to make life changes ... my life is going to have to change from that point of view'", "'part of it was just ignorance be part of it'"]), Code(slug='brain-retraining-as-a-recovery-path', name='Embracing brain retraining as a key to recovery', description="Initial skepticism toward brain retraining shifted to acceptance after understanding it addressed body’s protective response and mental 'fight or flight' mode, leading to participation in program and positive initial results within two weeks.", quotes=["'my first reaction was oh no raylan no when do you start telling me it's all on my brain'", "'when he explaining ... your body has switched down some of the genes ... you're stuck in this fight too much ... it just started making sense'", "'i contacted jason and went onto his program because it actually really made sense'"]), Code(slug='learning-boundaries-to-manage-energy', name='Learning to set boundaries to manage energy and avoid overcommitment', description='Participant emphasizes importance of setting personal boundaries like letting phone calls go to voicemail to prevent energy drain and managing social demands, as well as self-monitoring to stop before reaching exhaustion.', quotes=["'if my phone rings i let it go to voicemail so i can deal with it when i want to'", "'learning boundaries the hardest for me was learning boundaries'"]), Code(slug='difficulty-with-relaxation-and-rest', name='Difficulty with relaxation and understanding true rest', description="Participant struggles with relaxation practices like meditation and acknowledges need to retrain herself to understand and accept 'real rest' familiar to healthy individuals but challenging for her to implement consistently.", quotes=["'i'm not good at relaxing ... people say do meditation and this meditation is something i just ... struggled with it'", "'now i make myself every day lay down and take a nap or do some meditation ... i'm like real rest'"]), Code(slug='frustration-with-misunderstanding-by-others', name='Frustration and occasional anger toward others’ misunderstanding of illness', description='Participant feels annoyed and flares up when people minimize or misunderstand her illness or recovery, particularly those who never had the illness or who judge her lifestyle choices, emphasizing emotional toll of misunderstanding.', quotes=["'when people say silly things sometimes ... i can flare up'", "'i know what i've been through ... when somebody minimizes it you can think no'"]), Code(slug='maintaining-hope-and-positivity-despite-chronic-illness', name='Maintaining hope and positivity despite chronic illness challenges', description='Participant highlights her positive and obstinate personality as key factors in her refusal to accept permanent disability and her sustained belief in recovery and improvement despite long-term severe illness.', quotes=["'i'm just a very positive person i think i'm also obstinate'", "'never ever felt ... i was almost like in denial'"]), Code(slug='self-awareness-to-avoid-overexertion', name='Developing self-awareness to avoid overexertion and manage symptoms', description='Participant stresses importance of listening to body signals, recognizing triggers, and adjusting activities in timely fashion to prevent relapse and maintain health improvements.', quotes=["'i've learnt to listen to myself listen to my body ... work out what my triggers are'", "'i can stop myself before i actually get to the stage where i'm really pushing pushing boundaries'"])] codes=[Code(slug='holistic-recovery-focus-mecfs', name='Focusing on holistic recovery instead of individual symptoms', description='Participants described the importance of focusing on overall body support and holistic healing in managing MECFS rather than trying to treat each symptom individually. Trying to treat isolated symptoms was seen as overwhelming and ineffective, while a comprehensive approach contributed to gradual recovery.', quotes=['...my recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole...', '...targeting the specific symptoms was never healing them in my experience...', '...i pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone...']), Code(slug='symptom-comparison-limitations', name='Desire for symptom comparison but finding it unhelpful', description='Participants expressed wanting to compare their symptoms with others to find reassurance or hopeful signs of recovery, but found this approach often unhelpful or even misleading. They noted that MECFS symptoms vary widely across individuals, making direct symptom comparisons unproductive and potentially discouraging.', quotes=["...people want to compare their symptoms against mine... to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope...", "...if someone is sizing up their illness against my illness and it doesn't match exactly... that means that they do not have a chance of recovering...", "...don't get too caught up on comparing symptoms... scanning information for what were their test results... it probably won't help you personally..."]), Code(slug='symptom-management-as-palliation-not-cure', name='Using symptom management mainly for comfort rather than recovery', description='Participants described symptom management during MECFS as largely palliative—to ease discomfort—not a path to cure. Painkillers, sedatives, and other symptom treatments helped manage the suffering temporarily but did not address the underlying illness, which required a broader healing strategy.', quotes=['...symptom management that i did was more palliative and not so much about recovery...', '...if i had pain i might take painkillers or if i was having really bad problems with sleeping... i might go see my doctor and get some prescription sedatives...', '...targeting the specific symptoms was never healing them in my experience...']), Code(slug='need-for-personalized-recovery-plans', name="Need to tailor recovery plans individually to each person's lifestyle and journey", description="Participants highlighted the importance of creating personalized recovery plans tailored to each individual's unique symptoms, lifestyle, and disease experience. Recovery methods that worked for one person might not work for another, and pacing and treatments should be adapted accordingly.", quotes=["...somebody's recovery plan and them selecting the things they want to try needs to be tailored as well...", '...pacing has to be tailored individually for a particular person because their life is so different...', '...look at your own life like a scientist without freaking out about everything...']), Code(slug='frustration-with-symptom-focused-help-seeking', name='Frustration and disappointment from focusing on symptom-specific fixes', description='Participants shared feelings of desperation, frustration, and disillusionment from seeking specific symptom fixes through extensive research, treatments, and comparisons. Many attempts, including costly and risky interventions, failed to provide holistic healing, leading to emotional exhaustion and the need to find alternative strategies.', quotes=['...i spent thousands of hours googling my symptoms...', '...this led me to spend thousands of dollars... i almost poisoning myself by buying organic elderberries...', "...i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one..."]), Code(slug='emotional-boundaries-around-symptom-discussion', name='Setting emotional boundaries around discussing past symptoms', description='Participants expressed the need to set boundaries around conversations about symptoms, including avoiding one-on-one symptom troubleshooting. Sharing their recovery stories was positive but revisiting symptoms was traumatic and could be overwhelming, necessitating limits to preserve well-being.', quotes=['...i now have boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either...', "...writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there...", '...consider that people who share their stories are still human and it might still be fresh their challenges on their journey...'])] codes=[Code(slug='walking-miracle-gratitude-for-life-38', name='Walking miracle gratitude for life after chronic illness', description='This code captures the deep appreciation and awe the participant feels about living a life they once only dreamed of due to recovering from chronic illness. They describe moments of enjoying life with childlike wonder and being grateful each day despite small setbacks.', quotes=["I'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible", "this joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes", "It's like being like when you watch a six year old wandering through the world ... these new eyes where you just get to almost be childlike again"]), Code(slug='difficulty-relating-to-healthy-friends-81', name='Difficulty relating to healthy friends post illness', description='The participant experiences detachment and struggle maintaining friendships with physically healthy friends who complain about their lives. They find it hard to relate to people who seem to take their health for granted and have difficulty understanding those who choose not to engage in activities like working out, which the participant once loved but had to give up.', quotes=["It is hard though to have friends who've never been through it ... and they complain about their lives and i just feel such a detachment sometimes", "Sometimes it's hard for me to be their friend now because I'm like you have it all", 'I really struggle with people who seem physically able to go to the gym but just choose not to', "I would give anything to (work out) because i love working out so that's one of my things that i really miss"]), Code(slug='diagnosis-delay-and-misdiagnosis-60', name='Frustration with delayed diagnosis and misdiagnosis', description="The participant recounts the challenges in receiving an accurate diagnosis. Initially diagnosed with fibromyalgia, their fatigue symptoms were overlooked which delayed appropriate treatment. They express frustration with the medical system's lack of understanding and care for their chronic fatigue symptoms over many years.", quotes=['I was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued', "no one would even really treat it i don't think they really what to do", 'It took a while before i even got the chronic fatigue diagnosis but no one would even really treat it for many years']), Code(slug='self-advocacy-for-healthcare-72', name='Self advocacy and research to access better healthcare', description='The participant took an active role in managing their health by rehabilitating themselves, researching doctors, and eventually moving to access better medical care. They found a nurse practitioner who performed comprehensive blood work and helped identify underlying infections. This proactive approach was crucial for their eventual diagnosis and treatment plan.', quotes=['I kept rehabilitate myself ... researching doctors researching as much as i could', "Eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors", 'She was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that']), Code(slug='genetic-condition-discovery-and-treatment-75', name='Discovery and treatment of genetic mitochondrial disease', description='The participant was diagnosed with a rare mitochondrial disease through full genome testing. This diagnosis explained their inability to fight infections and fatigue. Treatment included a mitochondrial cocktail which helped their body produce mitochondria and regain strength to combat infections, marking a turning point in their recovery.', quotes=['I did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven', "He put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections", 'By him supplementing and boosting my mitochondria i could now fight the infections']), Code(slug='drastic-lifestyle-changes-for-recovery-81', name='Drastic lifestyle changes including diet and environment for recovery', description='The participant emphasizes the importance of significant lifestyle modifications for healing including an elimination diet, gradual movement rehabilitation, and removing environmental toxins. Specific dietary changes involved cutting out dairy, gluten, sugar, and nightshades, which were once inflammatory but sometimes reintroduced gradually.', quotes=['I had to dramatically change my diet ... use food as medicine as a mindset', 'I removed all toxic ingredients immunotoxic i water filtration system on my house', 'Dairy gluten and sugar were main offenders and nightshades bothered me for a while']), Code(slug='overcoming-sugar-addiction-for-healing-56', name='Overcoming intense sugar addiction to support healing', description='The participant describes an intense physical addiction to sugar that disrupted their health and sleep patterns. Through gut healing and probiotics, cravings diminished, allowing them to develop a healthier relationship with food and regain control over their eating habits, marking an important step in recovery.', quotes=['Sugar was a massive one for me and sugar was a tough one for me ... i clearly had a physical addiction', 'I would get up in the middle of the night every single night and eat sugar', 'Once my body started healing the cravings went away']), Code(slug='movement-therapy-as-gentle-rehab-63', name='Movement therapy as gentle rehabilitation rather than exercise', description='The participant highlights the importance of very gradual and gentle movement therapy rather than typical exercise. They emphasize the challenges of balancing activity and rest in chronic fatigue syndrome, noting that even a few minutes of movement can be critical for oxygenation and lymphatic flow while avoiding pushing to the point of relapse.', quotes=['I had to gradually increase my ability to move', 'My exercise program was so small you know it was one to two minutes a day and in the beginning not even every single day', 'I couldn’t rest my way out of this i couldn’t just lay in bed or lay on the couch all day']), Code(slug='psychological-impact-and-growth-from-illness-80', name='Psychological impact and personal growth from chronic illness experience', description='The participant reflects on how chronic illness fundamentally changed their identity, values, and spirituality. They describe feelings of humility, acceptance, and deeper self-worth beyond professional achievements. The illness brought perspective, spiritual growth, gratitude, and a renewed appreciation for life and relationships.', quotes=['It humbled me changed me i maybe was prideful before i wouldn’t say i had a spirituality before', 'I had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that', 'this illness catapults our growth and puts us in a better direction']), Code(slug='fear-and-anxiety-during-pregnancy-after-illness-64', name='Fear and anxiety about pregnancy symptoms being illness relapse', description='The participant shares the anxiety and uncertainty during pregnancy about whether normal pregnancy symptoms like fatigue and headaches signal illness relapse. They learn to differentiate normal pregnancy experiences from chronic illness symptoms, practicing self-compassion and cautious optimism about their health journey.', quotes=["I keep reminding myself these are normal symptoms it's triggering sometimes to be like is this normal fatigue or is this going back", 'I keep reminding myself no it’s normal to have headaches when you’re pregnant it’s normal to feel tired', 'It has been quite a journey i keep reminding myself sometimes']), Code(slug='hope-and-positivity-in-chronic-illness-recovery-57', name='Hope and positivity through seeing others recover from chronic illness', description='The participant expresses how seeing recovery stories from others provides essential hope and motivation for their own healing journey. They highlight the loneliness and despair without such examples and stress the importance of community and shared experiences in sustaining perseverance through chronic illness.', quotes=["It's so nice to see so many people that are getting past these things", 'I remember when i first got sick i was trying to find recovery stories and i just couldn’t find any', "People start reaching out to me it's crazy like hey so nice to meet you you recovered as well"]), Code(slug='self-empowerment-through-knowledge-and-faith-64', name='Self empowerment through knowledge acquisition and faith in recovery', description="The participant credits their recovery journey to extensive self-education about their condition combined with their faith and spiritual trust. They emphasize the importance of trusting the healing process and rejecting limiting prognoses, comparing learning about illness to earning a 'bachelor’s degree' in chronic illness.", quotes=['I would just tell myself to trust that process', 'I had to go through all those years of research and learning', 'It was like getting a bachelor’s degree in chronic illness', 'You cannot limit a limitless guy'])] codes=[Code(slug='scary-and-confusing-early-illness-experience', name='Scary and confusing early illness experience', description='Participant describes the initial onset of chronic fatigue as confusing, frightening, and strange with symptoms that were hard to understand and manage. She was overwhelmed by sudden health decline and had to leave university, indicating a disruptive and scary period.', quotes=["i just didn't feel well at all... felt a bit fluy felt a bit strange felt a bit scared because it felt really weird", "i didn't know what was going on", "it was a really scary time definitely a time that i feel like i've grieved and worked with as i healed"]), Code(slug='feeling-isolated-due-to-illness', name='Feeling isolated due to illness', description='Participant felt isolated because she had to return home and was separated from her friends who were still attending university, leading to feelings of loneliness with limited social support beyond family.', quotes=["all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family", 'it was a very tough time']), Code(slug='rejection-of-depression-diagnosis-and-emotional-awareness', name='Rejection of depression diagnosis and emotional awareness', description="Participant rejected doctors' initial diagnosis of depression as the sole cause, sensing a deeper underlying physical illness despite emotional challenges and some depressive feelings related to her illness.", quotes=['one of the first doctors said she just thought i was depressed that was it', "i knew it wasn't just depression i knew there was emotion about feeling unwell"]), Code(slug='hope-from-meditation-and-yoga-practices', name='Hope from meditation and yoga practices', description='Early engagement with meditation, yoga, and breath work brought short-lived improvements, offering participant moments of hope and relief, though benefits were often temporary and inconsistent over long recovery.', quotes=['i thought i did think quite early on well perhaps meditation and yoga can help me heal', 'doing the alternate nostril breathing and noticing i felt different after doing it', "sometimes i'd notice i felt considerably better after doing one"]), Code(slug='desperation-leads-to-trying-various-alternative-therapies', name='Desperation leads to trying various alternative therapies', description='Participant pursued numerous alternative therapies out of desperation including acupuncture, reiki, nutrition therapy, and colon hydrotherapy, often with limited or mixed success, reflecting urgent search for a cure.', quotes=["i'd go for reiki and i'd go for this and i go for that", 'i even flew to america...to work with a healer', 'just loads of things i was i was so desperate to be well']), Code(slug='realization-of-suppressed-anger-and-unresolved-trauma', name='Realization of suppressed anger and unresolved trauma', description='Participant identified a deep pattern of suppressing anger and unreleased trauma impacting her recovery, acknowledging emotional blocks and the role of unresolved feelings in her physical symptoms.', quotes=["i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there", 'one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs']), Code(slug='mind-body-connection-and-trauma-understanding', name='Mind-body connection and trauma understanding', description='Participant found significant healing through acknowledging the mind-body link, understanding symptoms as manifestations of trauma such as freeze responses, and exploring emotional triggers underlying physical states.', quotes=['it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom', 'a lot of it was the impact of trauma on my system manifesting physically like a freeze response', 'started to really understand the mind body connection']), Code(slug='learning-authentic-self-expression-and-setting-boundaries', name='Learning authentic self-expression and setting boundaries', description='Recovery involved learning to express authentic emotions and needs without fear of upsetting others, using communication skills like non-violent communication to balance self-care and relationships.', quotes=['learning to be more myself more authentic', 'learning non violent communication... a way that i could communicate my feelings without it also being too much for someone else', "it's okay to have needs"]), Code(slug='spiritual-experience-as-part-of-healing-journey', name='Spiritual experience as part of healing journey', description='Spiritual awakening, meditation, and mystical experiences were deeply meaningful but sometimes destabilizing aspects of the recovery journey, requiring learning to balance spiritual insights with daily functioning.', quotes=['i had a kundalini or spiritual some kind of spiritual awakening', 'sometimes i felt like i left my body and i was like connecting with the whole universe', 'i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way']), Code(slug='ongoing-self-care-and-regulation-post-recovery', name='Ongoing self-care and regulation post recovery', description='Even years after recovery, participant still needed to manage emotional and trauma-related symptoms with self-regulation strategies like nature exposure and therapeutic work to maintain balance and well-being.', quotes=['i did have periodically sort of what i would now describe as trauma type symptoms', "i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature", 'that can still happen today but not to the extent it was']), Code(slug='career-shift-driven-by-healing-experience', name='Career shift driven by healing experience', description="Participant's prolonged healing journey influenced her career choice toward coaching and therapeutic work, integrating personal recovery insights into professional roles and continuous learning.", quotes=["i've done lots of different kinds of therapeutic and coaching trainings", 'been working in this field myself nearly twenty years', 'i do keep up quite a few of the practices that support me to heal and new practices']), Code(slug='recognizing-familial-and-ancestral-trauma-impact-on-health', name='Recognizing familial and ancestral trauma impact on health', description='Participant highlights the role of ancestral and family line trauma influencing illness patterns, recognizing wider systemic and generational factors contributing to chronic fatigue symptoms.', quotes=["a lot of my trauma wasn't necessarily personal but was ancestral... took on from my family line", 'sometimes... an illness in one person might not be the root but a wider family system issue'])] codes=[Code(slug='trauma-led-health-crisis', name='Trauma leading to sudden health crisis and exhaustion', description='Participant describes a traumatic sexual assault and subsequent intense physical illness (urinary tract infection during long flight) that triggered sudden, severe exhaustion and ME/CFS symptoms such as insomnia, brain fog, and digestive issues lasting for years.', quotes=["i was sexually assaulted and that led to a really grueling urinary tract infection... whole system just kind of blacked out... i just went totally kaput i felt like i had the flu twenty four seven... i felt like i couldn't remember the name of... digestive issues... hot flashes and pre menopausal symptoms even though i was so young"]), Code(slug='fear-and-uncertainty-after-diagnosis', name='Fear and uncertainty following chronic fatigue syndrome diagnosis', description='Upon receiving the chronic fatigue syndrome diagnosis, the participant experienced a mix of relief for having an explanation and devastating fear, likening the prognosis to a death or life sentence with no cure and ongoing suffering.', quotes=['you know i was so scared... i remember bawling... it was such a death sentence but in a way a life sentence that i was given that i would have to live with for years', "on the one hand i was relieved to have a diagnosis... on the other hand it was really devastating... a natural path doctor said there's no cure"]), Code(slug='resentment-towards-prescribed-diets', name='Resentment towards restrictive diets imposed in treatment', description='The participant describes feeling misery and resentment towards elimination diets (gluten-free, sugar-free, dairy-free) and restrictions imposed by medical and natural health practitioners that were not collaboratively chosen and felt imposed rather than empowering.', quotes=["it was like not only are you totally miserable but we're going to take away anything you enjoy eating", "i felt like it was being done to me... actually he said you know what i think that's perpetuating the trauma", "there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing"]), Code(slug='regaining-agency-in-healing', name='Regaining personal agency and control in healing journey', description='Participant highlights the importance of reclaiming personal power and actively collaborating in their healing process, as opposed to passively following medical instructions, which increased resentment and hindered healing progress.', quotes=['at some point i have to regain my agency and my power and my collaboration in my healing', 'i started realizing with diet and everything else... otherwise i was resenting it', "someone sees me and i didn't even know that's how i felt"]), Code(slug='mental-peace-despite-physical-symptoms', name='Experiencing mental peace while symptoms persist', description='Despite ongoing severe physical symptoms, participant describes achieving a mental state of peace and nonresistance through meditation and spiritual connection, observing symptoms without emotional struggle, which aided emotional coping and eventual recovery progress.', quotes=["there was this internal state of nonresistance or peace... and it really wasn't something i tried to do... it just kind of happened", 'i was kind of watching the symptoms but felt peace', 'i really started meditating and practicing yoga and that sense of spiritual connection really helped']), Code(slug='brain-based-explanation-for-fatigue-symptoms', name='Adopting brain and nervous system explanation for ME/CFS symptoms', description="Learning that symptoms are perpetuated by brain and nervous system's stress response and not directly by viruses or physical damage gave participant hope and understanding, shifting from feeling helpless to empowered to calm the nervous system.", quotes=['she explained all these viruses were suppressing the immune system... but it was how her brain and nervous system were processing stress', "she said 'you're not sick, you're stressed, your system is stuck in this pattern'", 'the brain generates pain... fatigue because it senses danger... danger can be psychological as well as physical']), Code(slug='self-compassion-supporting-recovery', name='Cultivating self-compassion to manage symptoms and aid recovery', description='Participant emphasizes that adopting self-compassion and kindness toward oneself reduces self-criticism that otherwise triggers stress and perpetuates symptoms, enabling more effective emotional regulation and eventual physical improvement.', quotes=['self criticism actually does activate the danger alarm in the brain... so it can feed into symptoms', "i just talk to myself in a compassionate way... i'm so sorry... what do you want or need right now", 'to realize having compassion on ourselves is helpful and can soften the blow']), Code(slug='impact-of-personality-on-symptom-perpetuation', name='Role of personality traits like perfectionism in illness experience', description='Perfectionism, people-pleasing, conscientiousness and holding in emotions were discussed as personality traits common in those with ME/CFS, contributing to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.', quotes=['perfectionist check, people pleasers check... really conscientious, hard driving', "holding the emotions... it's kind of like a pressure cooker", 'people who get cfs are really nice people but they hold in emotions']), Code(slug='importance-of-emotional-processing', name='Acknowledging and processing emotions as key to recovery', description='Participant shares therapeutic practices like journaling and psychotherapy that helped them express anger, grief, and trauma, releasing emotional pressure that contributed to nervous system hypervigilance and symptom worsening.', quotes=['some psychotherapy was helpful... talk through griefs', 'i did some journaling... just to get out frustration i was too nice to say to anyone', 'journaling your anger... bottled up anger can be very harmful']), Code(slug='validation-and-hope-from-connection', name='Finding validation and hope through empathetic connection', description='Talking with someone who truly understood the illness experience and explained the brain-based mechanism provided a critical moment of validation and hope, leading to a spontaneous increase in energy and belief in recovery.', quotes=['she cared a lot... spent three hours on the phone with me', 'i felt like i finally heard the truth... it gave me hope', 'after that conversation i got up and ran around the block like i had not ran in thirteen years'])] codes=[Code(slug='energy-loss-and-fatigue-in-cfs-long-covid', name='Energy loss and fatigue reducing daily activity', description='Participant experienced a noticeable drop in energy and motivation to engage in usual activities, leading to extended periods of rest and physical symptoms like canker sores, reflecting the debilitating impact of CFS/long COVID on daily life.', quotes=["...i just started to get really tired and i didn't have the motivation to go out and do as many activities...", '...laying in bed i would get these canker sores and just overall not feeling the best']), Code(slug='frustration-of-inconclusive-medical-tests', name='Frustration from inconclusive medical investigations', description='Participant felt frustration and uncertainty when medical tests showed normal results despite ongoing symptoms, leading to self-doubt about the origin of symptoms and exploration of mental health explanations.', quotes=['...i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work...', '...thought maybe it was something mentally that was causing this']), Code(slug='initial-skepticism-of-brain-retraining-technique', name='Initial skepticism towards brain retraining techniques', description='Participant was initially doubtful about the efficacy of brain retraining and hypnosis-related methods but committed to the program and found these techniques effective for symptom management and anxiety reduction.', quotes=['...in the beginning i was a little skeptical because the program does have like a hypnosis type of effect...', '...once i really committed to learning the program it really made a difference']), Code(slug='importance-of-mental-stamina-for-active-recovery', name='Importance of mental stamina for physical activity recovery', description='Participant emphasized the growth in mental stamina and positive mindset as critical to progressing from basic functioning to running a 10k and training for a marathon, showing the mental aspects integral to physical recovery.', quotes=["...before i don't think i would have had the mental stamina to do that...", '...now i just have that positive affirmations and changing the way of my mindset from fix to growth...']), Code(slug='valuing-supportive-encouragement-in-recovery', name='Valuing supportive and personal encouragement during recovery', description='Participant highlighted how personalized encouragement and belief from program coach Jason boosted motivation and aided recovery, illustrating the importance of personal connection in healing journeys.', quotes=["...he would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you're doing great...", "...it's just great having someone who believes in you that much..."]), Code(slug='developing-empowering-self-statements', name='Developing empowering self-statements to combat anxiety', description='Participant learned to replace disempowering anxiety statements with growth-oriented affirmations, facilitating a more positive and hopeful mindset conducive to ongoing recovery and emotional resilience.', quotes=["...i didn't realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better...", "...that's more of a journey rather than oh i'm stuck at this state of anxiety..."]), Code(slug='recognizing-the-journey-of-recovery-not-a-fix', name='Recognizing recovery as a journey, not a fixed state', description='Participant expressed understanding that recovery involves ongoing management rather than complete absence of symptoms, using tools to address fluctuations and maintain progress without fear.', quotes=["...i have now these tools to fix that so obviously you know life is stressful i'm still going to have some anxious moments but i can refocus and use these tools...", "...you got this and it's a journey so can't just keep comparing yourself to where you've been..."])] codes=[Code(slug='long-covid-frustration-and-isolation', name='Feeling frustrated and isolated due to long COVID limitations', description='Participants express frustration with the ongoing symptoms and limitations imposed by long COVID, highlighting feelings of isolation and disconnection from their former healthy selves and social life. This includes struggles with physical and cognitive impairments and the emotional toll of not being understood.', quotes=['...I just feel so drained all the time, like I used to be so active and now I can barely manage a short walk...', "...people don't see the struggle you go through every day, it makes you feel very alone...", '...it’s frustrating because you want to get better but the symptoms just keep dragging you down...']), Code(slug='desire-for-understanding-and-validation', name='Desire for understanding and validation from others', description='Participants highlight a strong need for others to acknowledge and believe their experience with long COVID and ME/CFS, as they often face skepticism or misunderstanding. This recognition is crucial for emotional support and reducing the stigma they encounter.', quotes=['...sometimes it feels like people think it’s all in your head...', '...I just want doctors and my family to really understand what I’m going through...', '...validation would mean the world because it proves that I’m not making this up...']), Code(slug='need-to-regain-physical-energy-and-function', name='Need to regain physical energy and return to normal function', description='A consistent desire to regain lost physical energy and resume activities that were previously routine is expressed. Participants describe longing to be able to do simple physical tasks, exercise, and engage in social and work activities without debilitating fatigue.', quotes=['...if I could just get some of my energy back, I’d feel like myself again...', '...I miss being able to just go for a jog or play with my kids without getting exhausted...', '...the fatigue is so overwhelming that even making a meal feels like climbing a mountain...']), Code(slug='search-for-effective-treatment-and-cures', name='Search for effective treatment and cures for symptom relief', description='Participants discuss their ongoing search for treatments or interventions that can bring relief from symptoms or lead to recovery. This includes frustration at the lack of clear treatments and the trial and error of various therapies.', quotes=['...I’ve tried so many treatments, but nothing seems to really work...', '...it’s heartbreaking to not find anything that helps the pain or fatigue...', '...I keep hoping for a cure that will help me move on with my life...']), Code(slug='coping-with-identity-changes', name='Coping with changes to identity and sense of self', description='Participants reflect on the impact the illness has had on their identity and sense of self, expressing a mourning for their previous healthy self and struggling with the new limitations and changed roles in relationships and life.', quotes=['...I don’t recognize the person I am now compared to before...', '...it’s hard to accept that I can’t do what I used to do...', '...sometimes I feel like I’ve lost who I was...'])] codes=[Code(slug='anger-fight-flight-physiology-chronic-pain', name='Anger as fight or flight physiology driving chronic pain', description='Participants describe anger not as a psychological issue but as a physiological survival response generated by fight or flight sensations in the body. This intense physiological arousal leads to chronic pain and symptoms that are deeply wired in their nervous system, making them uncontrollable by conscious mind alone.', quotes=["the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight", 'anger and anxiety are physiological survival responses that we have no control over zero', 'anger and anxiety are gifts i mean how you survive without anger and anxiety']), Code(slug='chronic-pain-neuroplasticity-memory-pain-circuits', name='Chronic pain as embedded memory in neuroplastic pain circuits', description="Chronic pain is explained as an embedded memory in the brain's pain circuits that cannot be erased. Participants feel their pain persists because the brain memorizes the pain experience permanently, similar to phantom limb pain. Fighting the pain reinforces these circuits, while acceptance and new living patterns enable transcendence and symptom reduction.", quotes=['the pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone', 'the more you try to fight it and solve it the more you reinforce it', "you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain"]), Code(slug='role-of-unconscious-brain-in-survival-and-pain', name='Unconscious brain drives survival responses and chronic symptoms', description='Participants express how the unconscious brain processes millions of bits of information per second to keep them alive, without needing the conscious brain. Chronic symptoms arise from unconscious physiological threat states that the conscious brain struggles to control, explaining difficulty in managing chronic illness through conscious effort alone.', quotes=['the unconscious brain keeps you alive we do not need conscious brain to stay alive', 'the unconscious brain is eleven million bits of your patient per second the conscious brain is forty', "you can't control it and so it's like trying to drag stir with handbrakes"]), Code(slug='letting-go-fighting-pain-key-to-healing', name='Letting go of fighting pain as crucial to healing process', description='Participants describe a shift from actively trying to fix or fight their pain towards letting go and accepting it as key to healing. This change in relationship towards pain reduces reinforcement of pain circuits, enables separation from pain, and supports creating new, pain-free neural pathways through living life on their own terms.', quotes=["the hardest part of this project by far is people can't help but try to fix themselves", 'you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain', "the pain she or you're here as you start getting on with your life the way you want to your terms that's the solution"]), Code(slug='threat-physiology-explains-chronic-symptoms', name='Threat physiology underlies chronic mental and physical symptoms', description='Participants reveal that chronic symptoms, including pain, anxiety, depression and other diseases, stem from sustained threat physiology involving hyperactive nervous system responses and inflammation. This state breaks down the body over time and maintains symptoms, emphasizing the need to calm the physiology rather than solely treat symptoms.', quotes=['every chronic disease with few exceptions are related to chronic stress', 'the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really', 'chronic fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress']), Code(slug='separation-from-negative-thoughts-in-pain', name='Separating oneself from negative and repetitive thoughts', description='Participants highlight the importance of separating their identity from negative intrusive thoughts and repetitive thought patterns that fuel anxiety and pain. Techniques like expressive writing, mindfulness and cognitive behavioral therapy help create this separation, reducing the physiological arousal that these thoughts cause.', quotes=["separate from the thoughts that's where my friend is conducted behavior therapy comes into play", 'if you work with that much so that separates you from the thoughts not solving them to say thought separation process', 'by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing']), Code(slug='nurturing-joy-for-chronic-pain-healing', name='Nurturing joy as a vital part of healing journey', description='Participants emphasize nurturing joy through positive experiences, relationships, and mindset as essential for healing chronic pain and symptoms. Joy helps build new neural pathways, counterbalances threat physiology, and supports a flourishing life beyond pain rather than solely focusing on fixing negative symptoms.', quotes=["the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible", "you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing", "you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs"]), Code(slug='importance-of-sleep-diet-exercise-in-nervous-system-calm', name='Importance of sleep diet and exercise for calming nervous system', description='Participants discuss sleep, diet, and exercise as foundational pillars to calm the nervous system and support healing. Lack of sleep contributes directly to chronic pain development, and improving these areas helps regulate physiology, reduce inflammation, and promote regeneration, forming an essential part of recovery processes.', quotes=["if you address sleep is number one people weren't sleeping", 'lack of sleep actually causes chronicle back pain not the way around', 'sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system']), Code(slug='role-of-physiology-over-conscious-control', name="Physiology's dominance over conscious brain in symptom experience", description='Participants relate that physiological responses in the nervous system vastly overpower the conscious brain’s ability to control thoughts or symptoms. Fight or flight states inhibit neocortex functions and cognitive thinking, resulting in automatic reactions and making conscious efforts insufficient to manage symptoms alone.', quotes=["it's about half a million times stronger than your conscious brain", "when you're in fight or flight your highest thinking party or brain the neocortex doesn't work", "by the time you think about it so let's have a thoughts for second"]), Code(slug='skepticism-as-starting-point-for-healing-engagement', name='Using skepticism as a starting point to engage in healing', description='Participants express that skepticism is a natural and valid initial stance for people learning this approach. Encouraging embracing skepticism helps people start the healing journey by connecting with their own experience rather than blind belief, promoting curiosity and gradual learning to shift physiology and symptoms.', quotes=["i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said", "the key is connect to what's in there which is skepticism", 'connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change'])] codes=[Code(slug='book-as-key-to-chronic-pain-recovery', name='Book as key to chronic pain recovery approach', description='The participant found a specific book by Dr. John Sarno pivotal in understanding and recovering from chronic pain and multiple other health issues. This self-help resource resonated deeply with their symptoms and personality, leading to significant healing and influencing their therapeutic career.', quotes=['i found a book by a guy named john sono... my back pain was gone within a few months ... a lot of other health problems i had suffered with for years went away', 'sorrow said that a lot of people could get better just by reading the book', 'the symptoms right the fact that i had always had something really since i was a kid ... it was really resonating', 'the personality characteristics... were so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions']), Code(slug='emotion-focused-therapy-for-pain', name='Emotion-focused therapy as core to pain recovery process', description="Emotion-focused therapy, particularly Intensive Short-Term Dynamic Psychotherapy (ISTDP), is central to the participant's approach to chronic pain recovery. It focuses on safely accessing and processing suppressed emotions, especially anger and rage, which manifest as physical pain.", quotes=['the core of the intervention is this emotion focused approach... all emotions are healthy... we learn to disconnect from these emotions', 'we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain', 'brain pain research shows chronic pain lights up the amygdala which is responsible for emotions anger rage', 'ISTDP therapy allows patients to notice their bodily tension which is often anxiety about feeling anger or rage, helping them process these emotions']), Code(slug='barriers-to-therapy-engagement-and-trust', name='Barriers to engaging with emotion-focused therapy include fear and trust issues', description='The participant acknowledges that many patients struggle with engaging in ISTDP therapy due to fears, defenses, and trust issues. Therapy requires gradual emotional exposure at a tolerable pace to avoid setbacks, with some patients needing more time and support to lower their defenses and benefit.', quotes=["some folks can work through the process very quickly... but others it's more complicated and harder", 'i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions', 'ISTDP is incredibly difficult but supportive... it requires building emotional threshold gradually', 'some people resist because dealing with emotions is hard work, their symptoms can flare up as they engage emotionally']), Code(slug='transformation-in-professional-acceptance', name='Growing acceptance of emotion-focused therapy among medical professionals', description="Over time, there has been significant progress in the medical and professional community's acceptance of emotion-focused therapy for chronic pain, with increased training and referrals. Despite previous stigma, doctors now recognize the scientific support and therapeutic benefits, leading to more integration in treatment.", quotes=['most of the folks that i work with come to me because they know and understand and accept this', "i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work", 'medical schools are starting to have pain curriculum now and look towards scientifically supported approaches', 'doctors call me to see patients because there is a growing recognition of this approach']), Code(slug='mindset-shift-needed-for-therapy-acceptance', name='Mindset shift required for accepting therapy as part of recovery', description='Many patients initially see therapy only as coping rather than a true recovery pathway. The participant highlights the need for a paradigm shift from viewing mental health as separate to understanding physical and emotional health integration to accept emotion-focused therapy as a vital part of healing chronic pain.', quotes=['most of us think of our mental health and physical health as two separate things', "addressing your mental health stuff is a nice to have when i was really sick i started going into therapy but it wasn't to make myself get better it was just to help me cope", 'this is such a change in mindset and our understanding to see this as part of their path to getting better']), Code(slug='emotions-understood-as-physical-pain-source', name='Understanding emotions as the source of physical pain', description='The participant explains how emotions, especially those deemed unacceptable or dangerous, are converted into physical symptoms like chronic pain, supported by MRI studies. This understanding validates the psychological origins of pain and the need to address emotions therapeutically rather than focusing solely on structural damage.', quotes=['sometimes we develop strategies to ward off these uncomfortable or dangerous emotions and for chronic pain patients it tends to be physical pain', 'MRI research supports the process of emotions transforming into physical form', 'chronic pain patients brains light up the amygdala which is responsible for emotions like anger and rage', "there's really no very little relationship between structural changes and the pain that you're experiencing"])] First, make a short list of notes on the codes we want to keep. Avoid duplicates. Just list the names of the codes we will keep. Always use the tools/JSON response. ```json
{‘codes’: [{‘slug’: ‘persistent-fatigue-energy’, ‘name’: ‘Persistent fatigue and energy drain on standing’, ‘description’: ‘Participant describes extreme exhaustion and complete energy drain when standing after lying down, causing prolonged bedbound state and lasting impact on daily functioning.’, ‘quotes’: [“’…the minute i stood up i just couldn’t do anything i just drained of energy completely’”, “’…always tired constantly tired’”]}, {‘slug’: ‘overexertion-relapse-cycle’, ‘name’: ‘Overexertion leading to relapse and worsening symptoms’, ‘description’: ‘Participant explains the cycle of pushing beyond limits, subsequent virus contraction, and severe relapse, resulting in retirement and major activity limitations.’, ‘quotes’: [“’…walking like ten miles every day … i picked up a couple of viruses … can’t get out of bed’”, “’…had to retire at that stage … kept pushing myself’”]}, {‘slug’: ‘pushing-through-fatigue’, ‘name’: ‘Relentless pushing through fatigue despite physical limits’, ‘description’: ‘Despite exhaustion and inability to perform simple tasks, participant continually pushed themselves to walk and exercise daily, worsening energy depletion.’, ‘quotes’: [“‘i wouldn’t let myself not go … i’d wake up at five o’clock … just went walking’”, “‘then i couldn’t do anything for myself … had to lie down because no energy to cook’”]}, {‘slug’: ‘acceptance-lifestyle-changes’, ‘name’: ‘Realization and acceptance of necessary lifestyle changes’, ‘description’: ‘Participant initially in denial later recognized the need for significant lifestyle changes to manage illness instead of hoping to return to previous activity levels.’, ‘quotes’: [“’…i am going to have to make life changes … my life is going to have to change’”, “‘part of it was just ignorance be part of it’”]}, {‘slug’: ‘brain-retraining-recovery’, ‘name’: ‘Embracing brain retraining as a key to recovery’, ‘description’: “Skepticism about brain retraining shifted to acceptance after learning it addresses protective responses and mental ‘fight or flight’ state, leading to program participation and positive results.”, ‘quotes’: [“’…when he explaining … your body has switched down some of the genes … fight too much … made sense’”, “’…contacted jason and went onto his program because it actually really made sense’”]}, {‘slug’: ‘setting-boundaries-energy’, ‘name’: ‘Learning to set boundaries to manage energy and avoid overcommitment’, ‘description’: ‘Participant emphasizes importance of personal boundaries like letting calls go to voicemail to prevent energy drain and managing social demands by self-monitoring exhaustion.’, ‘quotes’: [“‘if my phone rings i let it go to voicemail so i can deal with it when i want to’”, “‘learning boundaries the hardest for me was learning boundaries’”]}, {‘slug’: ‘difficulty-relaxing-rest’, ‘name’: ‘Difficulty with relaxation and understanding true rest’, ‘description’: “Participant struggles with relaxation practices like meditation and needs to relearn the concept and practice of ‘real rest’ familiar to healthy individuals but hard for her to implement.”, ‘quotes’: [“’…i’m not good at relaxing … people say do meditation … i just struggled with it’”, “’…now i make myself every day lay down and take a nap or do some meditation’”]}, {‘slug’: ‘anger-misunderstanding-others’, ‘name’: ‘Frustration and occasional anger toward others’ misunderstanding of illness’, ‘description’: ‘Participant feels annoyance and flares when others minimize or misunderstand her illness or recovery, particularly those who never had the illness or pass unfair judgment, showing emotional toll of misunderstanding.’, ‘quotes’: [“‘when people say silly things sometimes … i can flare up’”, “’…when somebody minimizes it you can think no’”]}, {‘slug’: ‘hope-positivity-chronic-illness’, ‘name’: ‘Maintaining hope and positivity despite chronic illness challenges’, ‘description’: ‘Participant’s positive and obstinate personality is key to refusing acceptance of permanent disability and sustaining belief in recovery and improvement despite long-term severe illness.’, ‘quotes’: [“’…i’m just a very positive person … also obstinate’”, “‘never ever felt … i was almost like in denial’”]}, {‘slug’: ‘self-awareness-overexertion’, ‘name’: ‘Developing self-awareness to avoid overexertion and manage symptoms’, ‘description’: ‘Participant stresses importance of listening to body, recognizing triggers, and adjusting activities timely to prevent relapse and maintain health improvements.’, ‘quotes’: [“’…i’ve learnt to listen to myself listen to my body … work out what my triggers are’”, “‘i can stop myself before i actually get to the stage where i’m really pushing boundaries’”]}, {‘slug’: ‘holistic-recovery-focus’, ‘name’: ‘Focusing on holistic recovery instead of individual symptoms’, ‘description’: ‘Participants emphasize prioritizing overall body support and holistic healing in managing ME/CFS rather than treating isolated symptoms, which was overwhelming and ineffective, whereas holistic approach contributed to gradual recovery.’, ‘quotes’: [“’…recovery ended up being not about focusing on symptoms but on supporting my body as a whole…’”, “’…as i slowly improved overall my symptoms slowly decreased…’”]}, {‘slug’: ‘symptom-comparison-limit’, ‘name’: ‘Desire for symptom comparison but finding it unhelpful’, ‘description’: ‘Participants want to compare symptoms for reassurance but find it unhelpful or misleading due to wide symptom variation among individuals, making direct comparison counterproductive.’, ‘quotes’: [“’…people want to compare their symptoms against mine… to see if we’re the same…’”, “’…don’t get too caught up on comparing symptoms…’”]}, {‘slug’: ‘symptom-management-palliation’, ‘name’: ‘Using symptom management mainly for comfort rather than recovery’, ‘description’: ‘Symptom management is described as largely palliative to ease discomfort, with treatments alleviating suffering temporarily but not addressing underlying illness, which needs broader healing strategies.’, ‘quotes’: [“’…symptom management that i did was more palliative not about recovery…’”, “’…if i had pain i might take painkillers or see doctor for sedatives…’”]}, {‘slug’: ‘personalized-recovery-plans’, ‘name’: “Need to tailor recovery plans individually to person’s lifestyle and journey”, ‘description’: “Participants highlight importance of personalized recovery plans adapted to individual’s unique symptoms, lifestyle and disease experience, as pacing and treatments vary between individuals.”, ‘quotes’: [“’…somebody’s recovery plan … needs to be tailored…’”, “’…pacing has to be tailored individually because their life is so different…’”]}, {‘slug’: ‘frustration-symptom-fix’, ‘name’: ‘Frustration and disappointment from focusing on symptom-specific fixes’, ‘description’: ‘Participants report desperation and disillusionment from searching for symptom fixes, spending extensive time and money on treatments without holistic healing, leading to emotional exhaustion and need for alternative strategies.’, ‘quotes’: [“’…spent thousands of hours googling symptoms…’, ‘…almost poisoning myself by buying organic elderberries…’”, “’…needed a more comprehensive strategy rather than symptom by symptom fixes…’”]}, {‘slug’: ‘emotional-boundaries-symptoms’, ‘name’: ‘Setting emotional boundaries around discussing past symptoms’, ‘description’: ‘Participants set limits on discussing past symptoms and one-on-one symptom troubleshooting to avoid trauma and overwhelm, preserving well-being while sharing recovery stories positively.’, ‘quotes’: [“’…have boundaries … not talking about old symptoms …’”, “’…writing my story took forever because it’s traumatizing going back…’”]}, {‘slug’: ‘walking-miracle-gratitude’, ‘name’: ‘Walking miracle gratitude for life after chronic illness’, ‘description’: ‘Participant expresses deep appreciation for recovering to a life once only dreamed of, enjoying life with childlike wonder and daily gratitude despite occasional setbacks.’, ‘quotes’: [“’…i have to catch myself and be like you are a walking miracle like this is incredible’”, “‘It’s like being like when you watch a six year old wandering…’”]}, {‘slug’: ‘difficulty-relating-healthy’, ‘name’: ‘Difficulty relating to healthy friends post illness’, ‘description’: ‘Participant struggles maintaining friendships with healthy friends who complain or take health for granted, experiencing detachment and missing activities like working out.’, ‘quotes’: [“’…friends who’ve never been through it … complain about their lives … detachment’”, “’…i really struggle with people who seem physically able but choose not to…’”]}, {‘slug’: ‘diagnosis-delay-misdiagnosis’, ‘name’: ‘Frustration with delayed diagnosis and misdiagnosis’, ‘description’: “Participant recounts initial fibromyalgia diagnosis ignoring fatigue, leading to delayed appropriate diagnosis and frustration with medical system’s lack of understanding and care.”, ‘quotes’: [“’…diagnosed with fibromyalgia ignoring fatigue… no treatment for many years…’”, “‘It took a while before chronic fatigue diagnosis…’”]}, {‘slug’: ‘self-advocacy-healthcare’, ‘name’: ‘Self advocacy and research to access better healthcare’, ‘description’: ‘Participant actively researched and managed health, connecting with knowledgeable providers who identified underlying infections, aiding diagnosis and treatment.’, ‘quotes’: [“’…researching doctors as much as i could … moved to get better care…’”, “’…linked with doctors testing underlying infections…’”]}, {‘slug’: ‘genetic-mitochondrial-treatment’, ‘name’: ‘Discovery and treatment of genetic mitochondrial disease’, ‘description’: ‘Diagnosis of mitochondrial DNA depletion syndrome explained infections and fatigue; treatment focused on mitochondrial support helped regain strength and combat infections, marking recovery progress.’, ‘quotes’: [“’…mitochondrial disease called mitochondrial dna depletion syndrome…’”, “’…put on cocktail to boost mitochondria and fight infections…’”]}, {‘slug’: ‘drastic-lifestyle-changes’, ‘name’: ‘Drastic lifestyle changes including diet and environment for recovery’, ‘description’: ‘Significant lifestyle changes like elimination diet, gradual movement rehab, and removing toxins were key to healing, with dietary modifications reducing inflammation and aiding recovery.’, ‘quotes’: [“’…dramatically change diet using food as medicine…’”, “’…removed toxic ingredients and used water filtration…’”]}, {‘slug’: ‘overcoming-sugar-addiction’, ‘name’: ‘Overcoming intense sugar addiction to support healing’, ‘description’: ‘Participant overcame physical sugar addiction disrupting health and sleep through gut healing and probiotics, resulting in diminished cravings and healthier eating habits.’, ‘quotes’: [“‘Sugar was a massive one … clearly had physical addiction…’”, “’…up in middle of night every night and eat sugar’”]}, {‘slug’: ‘movement-therapy-gentle-rehab’, ‘name’: ‘Movement therapy as gentle rehabilitation rather than exercise’, ‘description’: ‘Participant emphasizes very gradual, gentle movement for rehabilitation rather than typical exercise, balancing activity with rest to avoid relapse.’, ‘quotes’: [“’…gradually increase ability to move … one to two minutes a day initially…’”, “’…couldn’t rest my way out of this i couldn’t just lay in bed…’”]}, {‘slug’: ‘psychological-growth-illness’, ‘name’: ‘Psychological impact and personal growth from chronic illness experience’, ‘description’: ‘Participant reflects on how illness changed identity, values, spirituality, fostering humility, acceptance, spiritual growth, gratitude and deeper appreciation for life and relationships.’, ‘quotes’: [“‘It humbled me … changed me … i wouldn’t say i had spirituality before’”, “’…illness catapults our growth and puts us in a better direction’”]}, {‘slug’: ‘pregnancy-anxiety-relapse’, ‘name’: ‘Fear and anxiety about pregnancy symptoms being illness relapse’, ‘description’: ‘Participant describes anxiety and uncertainty distinguishing pregnancy symptoms from illness relapse, learning self-compassion and cautious optimism about health journey.’, ‘quotes’: [“‘I keep reminding myself these are normal symptoms… fatigue or relapse?’”, “’…normal to have headaches when pregnant, normal to feel tired…’”]}, {‘slug’: ‘hope-positivity-others-recover’, ‘name’: ‘Hope and positivity through seeing others recover from chronic illness’, ‘description’: ‘Participant gains essential hope and motivation by seeing recovery stories, highlighting importance of community and shared experience to sustain perseverance through chronic illness.’, ‘quotes’: [“’…so nice to see many people getting past these things’”, “’…people start reaching out to me, i recovered as well…’”]}, {‘slug’: ‘self-empowerment-knowledge-faith’, ‘name’: ‘Self empowerment through knowledge acquisition and faith in recovery’, ‘description’: ‘Participant credits self-education on illness combined with spiritual trust and faith as key to recovery, emphasizing trust in healing process and rejection of limiting prognoses.’, ‘quotes’: [“’…had to go through years of research and learning’”, “‘It was like getting a bachelor’s degree in chronic illness’”]}, {‘slug’: ‘scary-confusing-early-illness’, ‘name’: ‘Scary and confusing early illness experience’, ‘description’: ‘Participant describes onset of chronic fatigue as frightening and confusing, with overwhelming health decline requiring university leave and grieving process.’, ‘quotes’: [“’…felt a bit fluy felt a bit strange felt a bit scared because it felt really weird’”, “’…didn’t know what was going on … really scary time’”]}, {‘slug’: ‘feeling-isolated-illness’, ‘name’: ‘Feeling isolated due to illness’, ‘description’: ‘Participant felt lonely after returning home separated from university friends, relying primarily on family for support during tough times.’, ‘quotes’: [“’…all my friends from home had gone to university … didn’t really have anyone other than family’”, “’…it was a very tough time’”]}, {‘slug’: ‘reject-depression-diagnosis’, ‘name’: ‘Rejection of depression diagnosis and emotional awareness’, ‘description’: ‘Participant rejected doctor depression diagnosis, believing deeper physical illness despite emotional challenges and depression related to illness.’, ‘quotes’: [“‘one of the first doctors said she just thought i was depressed’”, “‘i knew it wasn’t just depression i knew there was emotion about feeling unwell’”]}, {‘slug’: ‘hope-meditation-yoga’, ‘name’: ‘Hope from meditation and yoga practices’, ‘description’: ‘Early meditation, yoga and breath work brought some relief and hope though benefits were sometimes temporary and inconsistent during long recovery.’, ‘quotes’: [“’…perhaps meditation and yoga can help me heal’”, “’…felt different after doing alternate nostril breathing’”]}, {‘slug’: ‘desperation-trying-therapies’, ‘name’: ‘Desperation leads to trying various alternative therapies’, ‘description’: ‘Participant tried multiple alternative therapies such as acupuncture, reiki, nutrition, colon hydrotherapy out of desperation, with limited or mixed success.’, ‘quotes’: [“’…went for reiki and this and that’”, “’…flew to america to work with healer’”]}, {‘slug’: ‘suppressed-anger-trauma’, ‘name’: ‘Realization of suppressed anger and unresolved trauma’, ‘description’: ‘Participant recognized suppressed anger and trauma affecting recovery, identifying emotional blocks and unresolved feelings contributing to physical symptoms.’, ‘quotes’: [“’…had suppressed anger and unresolved trauma in my system’”, “’…avoiding conflict at all costs’”]}, {‘slug’: ‘mindbody-trauma-understanding’, ‘name’: ‘Mind-body connection and trauma understanding’, ‘description’: ‘Participant found healing by exploring mind-body link, viewing symptoms as trauma manifestations such as freeze response, and identifying emotional triggers.’, ‘quotes’: [“’…looking at symptoms … emotion underlying this symptom’”, “’…impact of trauma on my system manifesting physically like a freeze response’”]}, {‘slug’: ‘authentic-self-expression’, ‘name’: ‘Learning authentic self-expression and setting boundaries’, ‘description’: ‘Recovery involved learning to express authentic emotions and needs without fear, employing communication skills to balance self-care and relationships.’, ‘quotes’: [“‘learning to be more myself more authentic’”, “‘learning non violent communication…’”]}, {‘slug’: ‘spiritual-experience-healing’, ‘name’: ‘Spiritual experience as part of healing journey’, ‘description’: ‘Spiritual awakening, meditation, and mystical experiences were deep and sometimes destabilizing parts of recovery, requiring balance of spiritual insight and daily functioning.’, ‘quotes’: [“’…spiritual awakening’”, “’…felt like connecting with the whole universe’”]}, {‘slug’: ‘ongoing-self-care-post-recovery’, ‘name’: ‘Ongoing self-care and regulation post recovery’, ‘description’: ‘Participant manages emotional and trauma symptoms post-recovery with self-regulation strategies including nature exposure and therapeutic work to maintain well-being.’, ‘quotes’: [“’…periodically trauma type symptoms’”, “’…go do work with a practitioner or spend night time in nature’”]}, {‘slug’: ‘career-shift-healing’, ‘name’: ‘Career shift driven by healing experience’, ‘description’: ‘Healing journey influenced career towards coaching and therapeutic work, integrating personal recovery insights professionally while continuing learning and practices.’, ‘quotes’: [“’…lots of therapeutic and coaching trainings’”, “’…nearly twenty years working in this field’”]}, {‘slug’: ‘familial-ancestral-trauma’, ‘name’: ‘Recognizing familial and ancestral trauma impact on health’, ‘description’: ‘Participant recognizes ancestral and family trauma influencing illness patterns and wider systemic generational factors contributing to chronic fatigue symptoms.’, ‘quotes’: [“’…a lot of my trauma wasn’t personal but was ancestral … from family line’”, “’…illness in one person might be a wider family system issue’”]}, {‘slug’: ‘trauma-sudden-crisis’, ‘name’: ‘Trauma leading to sudden health crisis and exhaustion’, ‘description’: ‘Sexual assault and subsequent infection triggered severe exhaustion and ME/CFS symptoms like insomnia, brain fog and digestive issues lasting years.’, ‘quotes’: [“’…sexually assaulted and that led to urinary tract infection … system blacked out … flu twenty four seven’”, “’…digestive issues … hot flashes even though young’”]}, {‘slug’: ‘fear-uncertainty-diagnosis’, ‘name’: ‘Fear and uncertainty following chronic fatigue syndrome diagnosis’, ‘description’: ‘Diagnosis brought relief and devastating fear likened to death or life sentence with no cure, causing significant emotional distress.’, ‘quotes’: [“’…so scared … it was such a death sentence but also a life sentence’”, “’…relieved to have diagnosis … no cure’”]}, {‘slug’: ‘resentment-diets-treatment’, ‘name’: ‘Resentment towards restrictive diets imposed in treatment’, ‘description’: ‘Participant resented elimination diets imposed without collaboration, feeling miserable and disempowered rather than active in the healing process.’, ‘quotes’: [“’…totally miserable … taking away anything you enjoy eating’”, “’…felt it was being done to me … perpetuating trauma’”]}, {‘slug’: ‘regaining-agency-healing’, ‘name’: ‘Regaining personal agency and control in healing journey’, ‘description’: ‘Participant emphasizes reclaiming power and collaborating actively in healing process to avoid resentment and improve progress.’, ‘quotes’: [“’…have to regain my agency and collaboration in healing’”, “’…started realizing with diet … otherwise i was resenting it’”]}, {‘slug’: ‘mental-peace-symptoms’, ‘name’: ‘Experiencing mental peace while symptoms persist’, ‘description’: ‘Despite severe symptoms, participant achieved mental peace and nonresistance through meditation and spiritual connection, aiding emotional adaptation and recovery progress.’, ‘quotes’: [“’…internal state of nonresistance or peace … it just kind of happened’”, “’…watching symptoms but felt peace’”]}, {‘slug’: ‘brain-nervous-sys-fatigue’, ‘name’: ‘Adopting brain and nervous system explanation for ME/CFS symptoms’, ‘description’: ‘Learning symptoms result from brain and nervous system stress response shifted participant from helplessness to empowerment to calm nervous system and improve symptoms.’, ‘quotes’: [“’…brain and nervous system processing stress … not sick but stressed’”, “’…brain generates pain fatigue because it senses danger’”]}, {‘slug’: ‘self-compassion-recovery’, ‘name’: ‘Cultivating self-compassion to manage symptoms and aid recovery’, ‘description’: ‘Self-compassion reduces self-criticism that triggers stress and perpetuates symptoms, enabling emotional regulation and physical improvement.’, ‘quotes’: [“’…self criticism activates danger alarm in brain … feeds symptoms’”, “’…talk to myself in a compassionate way … what do you want right now’”]}, {‘slug’: ‘personality-traits-illness’, ‘name’: ‘Role of personality traits like perfectionism in illness experience’, ‘description’: ‘Traits like perfectionism, people-pleasing, conscientiousness and emotional suppression contribute to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.’, ‘quotes’: [“‘perfectionist check, people pleasers check … really conscientious’”, “‘holding the emotions … like a pressure cooker’”]}, {‘slug’: ‘emotional-processing-key’, ‘name’: ‘Acknowledging and processing emotions as key to recovery’, ‘description’: ‘Therapeutic practices like journaling and psychotherapy help express anger, grief and trauma, releasing emotional pressure contributing to nervous system hypervigilance and symptom worsening.’, ‘quotes’: [“’…some psychotherapy was helpful … talk through griefs’”, “’…journaling your anger … bottled up anger can be very harmful’”]}, {‘slug’: ‘validation-hope-connection’, ‘name’: ‘Finding validation and hope through empathetic connection’, ‘description’: ‘Talking with someone who understood illness and brain-based mechanisms offered crucial validation and hope, triggering energy and belief in recovery.’, ‘quotes’: [“’…spent three hours on phone … finally heard the truth … gave me hope’”, “’…got up and ran around the block like never before’”]}, {‘slug’: ‘energy-loss-fatigue’, ‘name’: ‘Energy loss and fatigue reducing daily activity’, ‘description’: ‘Participant experienced drop in energy and motivation, leading to extended rest periods and physical symptoms reflecting debilitating impact of CFS/long COVID.’, ‘quotes’: [“’…started to get really tired … no motivation to do activities…’”, “’…laying in bed would get canker sores … not feeling the best’”]}, {‘slug’: ‘frustration-medical-tests’, ‘name’: ‘Frustration from inconclusive medical investigations’, ‘description’: ‘Participant felt uncertain and doubtful when tests showed normal despite symptoms, leading to exploration of mental health explanations and self-doubt.’, ‘quotes’: [“’…multiple doctors said everything was perfectly fine …’”, “’…thought maybe something mentally causing this’”]}, {‘slug’: ‘skepticism-brain-retraining’, ‘name’: ‘Initial skepticism towards brain retraining techniques’, ‘description’: ‘Participant doubted brain retraining programs at first, but upon commitment found them effective for symptom management and anxiety reduction.’, ‘quotes’: [“’…program has hypnosis type of effect … initially skeptical’”, “’…committed and made a difference’”]}, {‘slug’: ‘mental-stamina-recovery’, ‘name’: ‘Importance of mental stamina for physical activity recovery’, ‘description’: ‘Mental stamina and positive mindset were crucial for progressing from basic function to running a 10k and training for a marathon, highlighting mental role in physical recovery.’, ‘quotes’: [“’…didn’t have mental stamina to do that before…’”, “’…positive affirmations and growth mindset…’”]}, {‘slug’: ‘supportive-encouragement’, ‘name’: ‘Valuing supportive and personal encouragement during recovery’, ‘description’: ‘Encouragement and belief from recovery coach Jason boosted motivation and aided healing, illustrating importance of personal connection in recovery journey.’, ‘quotes’: [“’…text messages saying i climbed mountain … i know you can do it’”, “’…great having someone who believes in you that much…’”]}, {‘slug’: ‘empowering-self-statements’, ‘name’: ‘Developing empowering self-statements to combat anxiety’, ‘description’: ‘Participant learned to replace disempowering anxiety statements with growth-oriented affirmations fostering positive and hopeful mindset for emotional resilience.’, ‘quotes’: [“’…saying i am anxious is disempowering … say i am on my way to getting better’”, “’…it’s a journey rather than a stuck state…’”]}, {‘slug’: ‘recovery-is-journey’, ‘name’: ‘Recognizing recovery as a journey, not a fixed state’, ‘description’: ‘Recovery involves ongoing management and coping rather than symptom absence, using tools to handle fluctuations and maintain progress without fear.’, ‘quotes’: [“’…have tools to fix that … life is stressful … i can refocus’”, “’…journey … can’t keep comparing yourself…’”]}, {‘slug’: ‘long-covid-frustration-isolation’, ‘name’: ‘Feeling frustrated and isolated due to long COVID limitations’, ‘description’: ‘Participants express frustration with ongoing symptoms and limitations from long COVID, feeling isolated and disconnected from prior healthy life and social connections.’, ‘quotes’: [“’…feel drained all the time … used to be active now barely manage walk…’”, “’…people don’t see struggle you go through … makes you feel alone…’”]}, {‘slug’: ‘desire-understanding-validation’, ‘name’: ‘Desire for understanding and validation from others’, ‘description’: ‘Participants strongly desire acknowledgement and belief in their long COVID and ME/CFS experience to reduce stigma and obtain emotional support.’, ‘quotes’: [“’…sometimes it feels like people think it’s in your head…’”, “’…validation would mean the world … proves not making this up…’”]}, {‘slug’: ‘regain-physical-energy’, ‘name’: ‘Need to regain physical energy and return to normal function’, ‘description’: ‘Participants express longing to regain physical energy and resume routine activities without debilitating fatigue, describing simple tasks as exhausting.’, ‘quotes’: [“’…if i could get some energy back … feel like myself’”, “’…fatigue so overwhelming even making meal feels like climbing mountain…’”]}, {‘slug’: ‘search-effective-treatment’, ‘name’: ‘Search for effective treatment and cures for symptom relief’, ‘description’: ‘Participants discuss ongoing search for treatments that relieve symptoms or bring recovery, facing frustration with lack of clear options and trial and error approaches.’, ‘quotes’: [“’…tried so many treatments but nothing works…’”, “’…keep hoping for a cure to move on with life…’”]}, {‘slug’: ‘coping-identity-changes’, ‘name’: ‘Coping with changes to identity and sense of self’, ‘description’: ‘Participants mourn their previous healthy self and struggle with new limitations and changed roles, affecting identity and self-concept.’, ‘quotes’: [“’…don’t recognize person i am now compared to before…’”, “’…hard to accept not doing what used to do…’”]}, {‘slug’: ‘anger-fight-flight’, ‘name’: ‘Anger as fight or flight physiology driving chronic pain’, ‘description’: ‘Anger is a survival physiological response generated by fight or flight sensations causing chronic pain deeply wired in nervous system, uncontrollable by conscious mind.’, ‘quotes’: [“’…biggest factor keeping people in pain is anger … fight or flight sensation’”, “‘anger and anxiety are physiological survival responses … no control’”]}, {‘slug’: ‘pain-memory-neuroplasticity’, ‘name’: ‘Chronic pain as embedded memory in neuroplastic pain circuits’, ‘description’: ‘Chronic pain seen as permanent brain memory in pain circuits that cannot be erased; fighting pain reinforces it; acceptance allows separation and symptom reduction.’, ‘quotes’: [“’…pain circuits absolutely permanent like phantom limb pain’”, “’…fighting pain reinforces it; you learn to separate yourself from pain’”]}, {‘slug’: ‘unconscious-brain-survival’, ‘name’: ‘Unconscious brain drives survival responses and chronic symptoms’, ‘description’: ‘Unconscious brain processes vast information to keep alive, chronic symptoms arise from physiological threat states beyond conscious control, explaining difficulty managing illness consciously.’, ‘quotes’: [“’…unconscious brain keeps you alive … conscious brain only small part’”, “’…can’t control it like dragging with handbrakes’”]}, {‘slug’: ‘letting-go-fighting-pain’, ‘name’: ‘Letting go of fighting pain as crucial to healing process’, ‘description’: ‘Healing requires shifting from fighting pain to letting go and acceptance, reducing reinforcement of pain circuits and creating new neural pathways supporting life on own terms.’, ‘quotes’: [“’…hardest part is people can’t help but try to fix themselves’”, “’…learn to separate yourself from pain and get on with life’”]}, {‘slug’: ‘threat-physiology-chronic-symptoms’, ‘name’: ‘Threat physiology underlies chronic mental and physical symptoms’, ‘description’: ‘Chronic symptoms including pain, anxiety and depression stem from sustained threat physiology causing nervous system hyperactivity and inflammation, requiring calming physiology rather than only treating symptoms.’, ‘quotes’: [“’…every chronic disease related to chronic stress’”, “’…anxiety depression bipolar ocd schizophrenia are metabolic inflammatory disorders’”]}, {‘slug’: ‘separating-negative-thoughts’, ‘name’: ‘Separating oneself from negative and repetitive thoughts’, ‘description’: ‘Separating identity from negative intrusive thoughts using therapies reduces physiological arousal caused by thoughts that fuel anxiety and pain.’, ‘quotes’: [“’…separate from the thoughts that’s where behavior therapy comes into play’”, “’…direct relationship between thoughts and suicide attempts’”]}, {‘slug’: ‘nurturing-joy-healing’, ‘name’: ‘Nurturing joy as a vital part of healing journey’, ‘description’: ‘Joy through positive experiences and relationships supports healing by building new neural pathways, countering threat physiology and enabling flourishing beyond pain.’, ‘quotes’: [“’…nurture joy if you’re fighting stress not possible’”, “’…good food good wine good friends promote healing’”]}, {‘slug’: ‘sleep-diet-exercise-nervous-system’, ‘name’: ‘Importance of sleep diet and exercise for calming nervous system’, ‘description’: ‘Sleep, diet and exercise foundational for calming nervous system, regulating physiology, reducing inflammation and supporting healing and regeneration.’, ‘quotes’: [“’…address sleep is number one…’”, “’…lack of sleep causes chronic back pain not the way around’”]}, {‘slug’: ‘physiology-over-consciousness’, ‘name’: “Physiology’s dominance over conscious brain in symptom experience”, ‘description’: ‘Physiological nervous system responses overpower conscious brain’s control of symptoms; fight or flight inhibits cognitive function, making conscious efforts insufficient alone.’, ‘quotes’: [“’…half a million times stronger than conscious brain’”, “’…highest thinking brain neocortex doesn’t work in fight or flight’”]}, {‘slug’: ‘skepticism-starting-point-healing’, ‘name’: ‘Using skepticism as a starting point to engage in healing’, ‘description’: ‘Skepticism is a valid initial stance for learning new healing approaches, encouraging connection to experience and curiosity rather than blind belief to gradually shift physiology and symptoms.’, ‘quotes’: [“’…don’t believe me … connect to skepticism … starting point’”, “’…start doing the work now letting your brain change’”]}, {‘slug’: ‘book-key-pain-recovery’, ‘name’: ‘Book as key to chronic pain recovery approach’, ‘description’: ‘A specific book was pivotal for understanding and recovery from chronic pain, resonating with symptoms and personality, influencing therapeutic career choice.’, ‘quotes’: [“’…book by john sono … back pain gone … health problems went away’”, “’…personality characteristics true for me and most clients’”]}, {‘slug’: ‘emotion-focused-pain-therapy’, ‘name’: ‘Emotion-focused therapy as core to pain recovery process’, ‘description’: ‘Intensive Short-Term Dynamic Psychotherapy (ISTDP) is central for chronic pain recovery, focusing on accessing and processing suppressed emotions like anger and rage causing physical pain.’, ‘quotes’: [“’…core intervention is emotion focused approach … all emotions healthy’”, “’…therapy helps notice bodily tension often anxiety about anger or rage’”]}, {‘slug’: ‘therapy-engagement-barriers’, ‘name’: ‘Barriers to engaging with emotion-focused therapy include fear and trust issues’, ‘description’: ‘Patients face fears and defenses that hinder engagement with emotion-focused therapy; require gradual emotional exposure and support to lower defenses and benefit from treatment.’, ‘quotes’: [“’…some folks work quickly others more complicated with challenges’”, “’…ISTDP difficult but supportive … gradual emotional threshold building’”]}, {‘slug’: ‘professional-acceptance-therapy’, ‘name’: ‘Growing acceptance of emotion-focused therapy among medical professionals’, ‘description’: ‘Medical community increasingly recognizes and integrates emotion-focused therapy for chronic pain, with training, referrals, and scientific support increasing over time.’, ‘quotes’: [“’…most folks come because they accept this approach’”, “’…training doctors in local hospital … growing recognition’”]}, {‘slug’: ‘mindset-shift-therapy-acceptance’, ‘name’: ‘Mindset shift required for accepting therapy as part of recovery’, ‘description’: ‘Acceptance of therapy requires paradigm shift from seeing mental health as separate to integrating physical and emotional health, moving from coping to true recovery path.’, ‘quotes’: [“’…mental health and physical health often thought separate’”, “’…therapy seen as coping not to get better initially’”]}, {‘slug’: ‘emotions-source-physical-pain’, ‘name’: ‘Understanding emotions as the source of physical pain’, ‘description’: ‘Emotions, especially unacceptable or dangerous ones, are converted into physical symptoms such as chronic pain; MRI research supports this process, validating psychological origins and need for emotional therapy.’, ‘quotes’: [“’…strategies to ward off dangerous emotions turned into physical pain’”, “’…chronic pain brains light up amygdala responsible for anger and rage’”]}]}
Type: Transform
You are a: Experienced qual researcher None You are at the final theme generation stage. You are provided preliminary themes, with their descriptions and relevant codes. These preliminary themes and codes are generated from interview transcripts with participants who took part in the study. A 'theme' relates to the experience of participants. Themes pertain to participants. Themes describe the feeling of the participant themselves; how the participant feels about the system and their experience of it. Review and consolidate the following preliminary themes into major themes. Each major theme should be distinct from the others. The major themes will be used to write the final report. A code can appear in multiple major themes if relevant. List all the relevant codes under each major theme. Use personal and domain-specific language and avoid generalized terms to generate names and descriptions of the final themes. Write with concise, concrete details and avoid clichés and generalizations. Avoid the word 'Navigating' in the names. Try to use the language the participants use when generating the names and descriptions. Directly use the language from the quotes and descriptions. Write the final theme name in sentence case. The name of the theme should consist of 8 to 15 words. Each final theme should have a description of 60 to 80 words and list all relevant codes. Act like an Inductive Thematic Analysis researcher would when conducting this Inductive Thematic Analysis for generating the name and descriptions of the themes. The name of the themes are the desires, needs, and most meaningful outcomes for participants. You will be rewarded if you can complete this effectively. Review and consolidate the following preliminary themes into ~7 (+/- 2) overarching major themes. Use fewer themes if there is too much overlap. Complete list of codes identified: codenotes: Codes to keep for final CodeList: - Persistent fatigue and energy drain on standing - Overexertion leading to relapse and worsening symptoms - Relentless pushing through fatigue despite physical limits - Realization and acceptance of necessary lifestyle changes - Embracing brain retraining as a key to recovery - Learning to set boundaries to manage energy and avoid overcommitment - Difficulty with relaxation and understanding true rest - Frustration and occasional anger toward others’ misunderstanding of illness - Maintaining hope and positivity despite chronic illness challenges - Developing self-awareness to avoid overexertion and manage symptoms - Focusing on holistic recovery instead of individual symptoms - Desire for symptom comparison but finding it unhelpful - Using symptom management mainly for comfort rather than recovery - Need to tailor recovery plans individually to each person's lifestyle and journey - Frustration and disappointment from focusing on symptom-specific fixes - Setting emotional boundaries around discussing past symptoms - Walking miracle gratitude for life after chronic illness - Difficulty relating to healthy friends post illness - Frustration with delayed diagnosis and misdiagnosis - Self advocacy and research to access better healthcare - Discovery and treatment of genetic mitochondrial disease - Drastic lifestyle changes including diet and environment for recovery - Overcoming intense sugar addiction to support healing - Movement therapy as gentle rehabilitation rather than exercise - Psychological impact and personal growth from chronic illness experience - Fear and anxiety about pregnancy symptoms being illness relapse - Hope and positivity through seeing others recover from chronic illness - Self empowerment through knowledge acquisition and faith in recovery - Scary and confusing early illness experience - Feeling isolated due to illness - Rejection of depression diagnosis and emotional awareness - Hope from meditation and yoga practices - Desperation leads to trying various alternative therapies - Realization of suppressed anger and unresolved trauma - Mind-body connection and trauma understanding - Learning authentic self-expression and setting boundaries - Spiritual experience as part of healing journey - Ongoing self-care and regulation post recovery - Career shift driven by healing experience - Recognizing familial and ancestral trauma impact on health - Trauma leading to sudden health crisis and exhaustion - Fear and uncertainty following chronic fatigue syndrome diagnosis - Resentment towards restrictive diets imposed in treatment - Regaining personal agency and control in healing journey - Experiencing mental peace while symptoms persist - Adopting brain and nervous system explanation for ME/CFS symptoms - Cultivating self-compassion to manage symptoms and aid recovery - Role of personality traits like perfectionism in illness experience - Acknowledging and processing emotions as key to recovery - Finding validation and hope through empathetic connection - Energy loss and fatigue reducing daily activity - Frustration from inconclusive medical investigations - Initial skepticism towards brain retraining techniques - Importance of mental stamina for physical activity recovery - Valuing supportive and personal encouragement during recovery - Developing empowering self-statements to combat anxiety - Recognizing recovery as a journey, not a fixed state - Feeling frustrated and isolated due to long COVID limitations - Desire for understanding and validation from others - Need to regain physical energy and return to normal function - Search for effective treatment and cures for symptom relief - Coping with changes to identity and sense of self - Anger as fight or flight physiology driving chronic pain - Chronic pain as embedded memory in neuroplastic pain circuits - Unconscious brain drives survival responses and chronic symptoms - Letting go of fighting pain as crucial to healing process - Threat physiology underlies chronic mental and physical symptoms - Separating oneself from negative and repetitive thoughts - Nurturing joy as a vital part of healing journey - Importance of sleep diet and exercise for calming nervous system - Physiology's dominance over conscious brain in symptom experience - Using skepticism as a starting point to engage in healing - Book as key to chronic pain recovery approach - Emotion-focused therapy as core to pain recovery process - Barriers to engaging with emotion-focused therapy include fear and trust issues - Growing acceptance of emotion-focused therapy among medical professionals - Mindset shift required for accepting therapy as part of recovery - Understanding emotions as the source of physical pain codes: codes=[Code(slug='persistent-fatigue-energy', name='Persistent fatigue and energy drain on standing', description='Participant describes extreme exhaustion and complete energy drain when standing after lying down, causing prolonged bedbound state and lasting impact on daily functioning.', quotes=["'...the minute i stood up i just couldn't do anything i just drained of energy completely'", "'...always tired constantly tired'"]), Code(slug='overexertion-relapse-cycle', name='Overexertion leading to relapse and worsening symptoms', description='Participant explains the cycle of pushing beyond limits, subsequent virus contraction, and severe relapse, resulting in retirement and major activity limitations.', quotes=["'...walking like ten miles every day ... i picked up a couple of viruses ... can't get out of bed'", "'...had to retire at that stage ... kept pushing myself'"]), Code(slug='pushing-through-fatigue', name='Relentless pushing through fatigue despite physical limits', description='Despite exhaustion and inability to perform simple tasks, participant continually pushed themselves to walk and exercise daily, worsening energy depletion.', quotes=["'i wouldn't let myself not go ... i'd wake up at five o'clock ... just went walking'", "'then i couldn't do anything for myself ... had to lie down because no energy to cook'"]), Code(slug='acceptance-lifestyle-changes', name='Realization and acceptance of necessary lifestyle changes', description='Participant initially in denial later recognized the need for significant lifestyle changes to manage illness instead of hoping to return to previous activity levels.', quotes=["'...i am going to have to make life changes ... my life is going to have to change'", "'part of it was just ignorance be part of it'"]), Code(slug='brain-retraining-recovery', name='Embracing brain retraining as a key to recovery', description="Skepticism about brain retraining shifted to acceptance after learning it addresses protective responses and mental 'fight or flight' state, leading to program participation and positive results.", quotes=["'...when he explaining ... your body has switched down some of the genes ... fight too much ... made sense'", "'...contacted jason and went onto his program because it actually really made sense'"]), Code(slug='setting-boundaries-energy', name='Learning to set boundaries to manage energy and avoid overcommitment', description='Participant emphasizes importance of personal boundaries like letting calls go to voicemail to prevent energy drain and managing social demands by self-monitoring exhaustion.', quotes=["'if my phone rings i let it go to voicemail so i can deal with it when i want to'", "'learning boundaries the hardest for me was learning boundaries'"]), Code(slug='difficulty-relaxing-rest', name='Difficulty with relaxation and understanding true rest', description="Participant struggles with relaxation practices like meditation and needs to relearn the concept and practice of 'real rest' familiar to healthy individuals but hard for her to implement.", quotes=["'...i'm not good at relaxing ... people say do meditation ... i just struggled with it'", "'...now i make myself every day lay down and take a nap or do some meditation'"]), Code(slug='anger-misunderstanding-others', name='Frustration and occasional anger toward others’ misunderstanding of illness', description='Participant feels annoyance and flares when others minimize or misunderstand her illness or recovery, particularly those who never had the illness or pass unfair judgment, showing emotional toll of misunderstanding.', quotes=["'when people say silly things sometimes ... i can flare up'", "'...when somebody minimizes it you can think no'"]), Code(slug='hope-positivity-chronic-illness', name='Maintaining hope and positivity despite chronic illness challenges', description='Participant’s positive and obstinate personality is key to refusing acceptance of permanent disability and sustaining belief in recovery and improvement despite long-term severe illness.', quotes=["'...i'm just a very positive person ... also obstinate'", "'never ever felt ... i was almost like in denial'"]), Code(slug='self-awareness-overexertion', name='Developing self-awareness to avoid overexertion and manage symptoms', description='Participant stresses importance of listening to body, recognizing triggers, and adjusting activities timely to prevent relapse and maintain health improvements.', quotes=["'...i've learnt to listen to myself listen to my body ... work out what my triggers are'", "'i can stop myself before i actually get to the stage where i'm really pushing boundaries'"]), Code(slug='holistic-recovery-focus', name='Focusing on holistic recovery instead of individual symptoms', description='Participants emphasize prioritizing overall body support and holistic healing in managing ME/CFS rather than treating isolated symptoms, which was overwhelming and ineffective, whereas holistic approach contributed to gradual recovery.', quotes=["'...recovery ended up being not about focusing on symptoms but on supporting my body as a whole...'", "'...as i slowly improved overall my symptoms slowly decreased...'"]), Code(slug='symptom-comparison-limit', name='Desire for symptom comparison but finding it unhelpful', description='Participants want to compare symptoms for reassurance but find it unhelpful or misleading due to wide symptom variation among individuals, making direct comparison counterproductive.', quotes=["'...people want to compare their symptoms against mine... to see if we're the same...'", "'...don't get too caught up on comparing symptoms...'"]), Code(slug='symptom-management-palliation', name='Using symptom management mainly for comfort rather than recovery', description='Symptom management is described as largely palliative to ease discomfort, with treatments alleviating suffering temporarily but not addressing underlying illness, which needs broader healing strategies.', quotes=["'...symptom management that i did was more palliative not about recovery...'", "'...if i had pain i might take painkillers or see doctor for sedatives...'"]), Code(slug='personalized-recovery-plans', name="Need to tailor recovery plans individually to person's lifestyle and journey", description="Participants highlight importance of personalized recovery plans adapted to individual's unique symptoms, lifestyle and disease experience, as pacing and treatments vary between individuals.", quotes=["'...somebody's recovery plan ... needs to be tailored...'", "'...pacing has to be tailored individually because their life is so different...'"]), Code(slug='frustration-symptom-fix', name='Frustration and disappointment from focusing on symptom-specific fixes', description='Participants report desperation and disillusionment from searching for symptom fixes, spending extensive time and money on treatments without holistic healing, leading to emotional exhaustion and need for alternative strategies.', quotes=["'...spent thousands of hours googling symptoms...', '...almost poisoning myself by buying organic elderberries...'", "'...needed a more comprehensive strategy rather than symptom by symptom fixes...'"]), Code(slug='emotional-boundaries-symptoms', name='Setting emotional boundaries around discussing past symptoms', description='Participants set limits on discussing past symptoms and one-on-one symptom troubleshooting to avoid trauma and overwhelm, preserving well-being while sharing recovery stories positively.', quotes=["'...have boundaries ... not talking about old symptoms ...'", "'...writing my story took forever because it's traumatizing going back...'"]), Code(slug='walking-miracle-gratitude', name='Walking miracle gratitude for life after chronic illness', description='Participant expresses deep appreciation for recovering to a life once only dreamed of, enjoying life with childlike wonder and daily gratitude despite occasional setbacks.', quotes=["'...i have to catch myself and be like you are a walking miracle like this is incredible'", "'It's like being like when you watch a six year old wandering...'"]), Code(slug='difficulty-relating-healthy', name='Difficulty relating to healthy friends post illness', description='Participant struggles maintaining friendships with healthy friends who complain or take health for granted, experiencing detachment and missing activities like working out.', quotes=["'...friends who've never been through it ... complain about their lives ... detachment'", "'...i really struggle with people who seem physically able but choose not to...'"]), Code(slug='diagnosis-delay-misdiagnosis', name='Frustration with delayed diagnosis and misdiagnosis', description="Participant recounts initial fibromyalgia diagnosis ignoring fatigue, leading to delayed appropriate diagnosis and frustration with medical system's lack of understanding and care.", quotes=["'...diagnosed with fibromyalgia ignoring fatigue... no treatment for many years...'", "'It took a while before chronic fatigue diagnosis...'"]), Code(slug='self-advocacy-healthcare', name='Self advocacy and research to access better healthcare', description='Participant actively researched and managed health, connecting with knowledgeable providers who identified underlying infections, aiding diagnosis and treatment.', quotes=["'...researching doctors as much as i could ... moved to get better care...'", "'...linked with doctors testing underlying infections...'"]), Code(slug='genetic-mitochondrial-treatment', name='Discovery and treatment of genetic mitochondrial disease', description='Diagnosis of mitochondrial DNA depletion syndrome explained infections and fatigue; treatment focused on mitochondrial support helped regain strength and combat infections, marking recovery progress.', quotes=["'...mitochondrial disease called mitochondrial dna depletion syndrome...'", "'...put on cocktail to boost mitochondria and fight infections...'"]), Code(slug='drastic-lifestyle-changes', name='Drastic lifestyle changes including diet and environment for recovery', description='Significant lifestyle changes like elimination diet, gradual movement rehab, and removing toxins were key to healing, with dietary modifications reducing inflammation and aiding recovery.', quotes=["'...dramatically change diet using food as medicine...'", "'...removed toxic ingredients and used water filtration...'"]), Code(slug='overcoming-sugar-addiction', name='Overcoming intense sugar addiction to support healing', description='Participant overcame physical sugar addiction disrupting health and sleep through gut healing and probiotics, resulting in diminished cravings and healthier eating habits.', quotes=["'Sugar was a massive one ... clearly had physical addiction...'", "'...up in middle of night every night and eat sugar'"]), Code(slug='movement-therapy-gentle-rehab', name='Movement therapy as gentle rehabilitation rather than exercise', description='Participant emphasizes very gradual, gentle movement for rehabilitation rather than typical exercise, balancing activity with rest to avoid relapse.', quotes=["'...gradually increase ability to move ... one to two minutes a day initially...'", "'...couldn't rest my way out of this i couldn't just lay in bed...'"]), Code(slug='psychological-growth-illness', name='Psychological impact and personal growth from chronic illness experience', description='Participant reflects on how illness changed identity, values, spirituality, fostering humility, acceptance, spiritual growth, gratitude and deeper appreciation for life and relationships.', quotes=["'It humbled me ... changed me ... i wouldn't say i had spirituality before'", "'...illness catapults our growth and puts us in a better direction'"]), Code(slug='pregnancy-anxiety-relapse', name='Fear and anxiety about pregnancy symptoms being illness relapse', description='Participant describes anxiety and uncertainty distinguishing pregnancy symptoms from illness relapse, learning self-compassion and cautious optimism about health journey.', quotes=["'I keep reminding myself these are normal symptoms... fatigue or relapse?'", "'...normal to have headaches when pregnant, normal to feel tired...'"]), Code(slug='hope-positivity-others-recover', name='Hope and positivity through seeing others recover from chronic illness', description='Participant gains essential hope and motivation by seeing recovery stories, highlighting importance of community and shared experience to sustain perseverance through chronic illness.', quotes=["'...so nice to see many people getting past these things'", "'...people start reaching out to me, i recovered as well...'"]), Code(slug='self-empowerment-knowledge-faith', name='Self empowerment through knowledge acquisition and faith in recovery', description='Participant credits self-education on illness combined with spiritual trust and faith as key to recovery, emphasizing trust in healing process and rejection of limiting prognoses.', quotes=["'...had to go through years of research and learning'", "'It was like getting a bachelor’s degree in chronic illness'"]), Code(slug='scary-confusing-early-illness', name='Scary and confusing early illness experience', description='Participant describes onset of chronic fatigue as frightening and confusing, with overwhelming health decline requiring university leave and grieving process.', quotes=["'...felt a bit fluy felt a bit strange felt a bit scared because it felt really weird'", "'...didn't know what was going on ... really scary time'"]), Code(slug='feeling-isolated-illness', name='Feeling isolated due to illness', description='Participant felt lonely after returning home separated from university friends, relying primarily on family for support during tough times.', quotes=["'...all my friends from home had gone to university ... didn't really have anyone other than family'", "'...it was a very tough time'"]), Code(slug='reject-depression-diagnosis', name='Rejection of depression diagnosis and emotional awareness', description='Participant rejected doctor depression diagnosis, believing deeper physical illness despite emotional challenges and depression related to illness.', quotes=["'one of the first doctors said she just thought i was depressed'", "'i knew it wasn't just depression i knew there was emotion about feeling unwell'"]), Code(slug='hope-meditation-yoga', name='Hope from meditation and yoga practices', description='Early meditation, yoga and breath work brought some relief and hope though benefits were sometimes temporary and inconsistent during long recovery.', quotes=["'...perhaps meditation and yoga can help me heal'", "'...felt different after doing alternate nostril breathing'"]), Code(slug='desperation-trying-therapies', name='Desperation leads to trying various alternative therapies', description='Participant tried multiple alternative therapies such as acupuncture, reiki, nutrition, colon hydrotherapy out of desperation, with limited or mixed success.', quotes=["'...went for reiki and this and that'", "'...flew to america to work with healer'"]), Code(slug='suppressed-anger-trauma', name='Realization of suppressed anger and unresolved trauma', description='Participant recognized suppressed anger and trauma affecting recovery, identifying emotional blocks and unresolved feelings contributing to physical symptoms.', quotes=["'...had suppressed anger and unresolved trauma in my system'", "'...avoiding conflict at all costs'"]), Code(slug='mindbody-trauma-understanding', name='Mind-body connection and trauma understanding', description='Participant found healing by exploring mind-body link, viewing symptoms as trauma manifestations such as freeze response, and identifying emotional triggers.', quotes=["'...looking at symptoms ... emotion underlying this symptom'", "'...impact of trauma on my system manifesting physically like a freeze response'"]), Code(slug='authentic-self-expression', name='Learning authentic self-expression and setting boundaries', description='Recovery involved learning to express authentic emotions and needs without fear, employing communication skills to balance self-care and relationships.', quotes=["'learning to be more myself more authentic'", "'learning non violent communication...'"]), Code(slug='spiritual-experience-healing', name='Spiritual experience as part of healing journey', description='Spiritual awakening, meditation, and mystical experiences were deep and sometimes destabilizing parts of recovery, requiring balance of spiritual insight and daily functioning.', quotes=["'...spiritual awakening'", "'...felt like connecting with the whole universe'"]), Code(slug='ongoing-self-care-post-recovery', name='Ongoing self-care and regulation post recovery', description='Participant manages emotional and trauma symptoms post-recovery with self-regulation strategies including nature exposure and therapeutic work to maintain well-being.', quotes=["'...periodically trauma type symptoms'", "'...go do work with a practitioner or spend night time in nature'"]), Code(slug='career-shift-healing', name='Career shift driven by healing experience', description='Healing journey influenced career towards coaching and therapeutic work, integrating personal recovery insights professionally while continuing learning and practices.', quotes=["'...lots of therapeutic and coaching trainings'", "'...nearly twenty years working in this field'"]), Code(slug='familial-ancestral-trauma', name='Recognizing familial and ancestral trauma impact on health', description='Participant recognizes ancestral and family trauma influencing illness patterns and wider systemic generational factors contributing to chronic fatigue symptoms.', quotes=["'...a lot of my trauma wasn't personal but was ancestral ... from family line'", "'...illness in one person might be a wider family system issue'"]), Code(slug='trauma-sudden-crisis', name='Trauma leading to sudden health crisis and exhaustion', description='Sexual assault and subsequent infection triggered severe exhaustion and ME/CFS symptoms like insomnia, brain fog and digestive issues lasting years.', quotes=["'...sexually assaulted and that led to urinary tract infection ... system blacked out ... flu twenty four seven'", "'...digestive issues ... hot flashes even though young'"]), Code(slug='fear-uncertainty-diagnosis', name='Fear and uncertainty following chronic fatigue syndrome diagnosis', description='Diagnosis brought relief and devastating fear likened to death or life sentence with no cure, causing significant emotional distress.', quotes=["'...so scared ... it was such a death sentence but also a life sentence'", "'...relieved to have diagnosis ... no cure'"]), Code(slug='resentment-diets-treatment', name='Resentment towards restrictive diets imposed in treatment', description='Participant resented elimination diets imposed without collaboration, feeling miserable and disempowered rather than active in the healing process.', quotes=["'...totally miserable ... taking away anything you enjoy eating'", "'...felt it was being done to me ... perpetuating trauma'"]), Code(slug='regaining-agency-healing', name='Regaining personal agency and control in healing journey', description='Participant emphasizes reclaiming power and collaborating actively in healing process to avoid resentment and improve progress.', quotes=["'...have to regain my agency and collaboration in healing'", "'...started realizing with diet ... otherwise i was resenting it'"]), Code(slug='mental-peace-symptoms', name='Experiencing mental peace while symptoms persist', description='Despite severe symptoms, participant achieved mental peace and nonresistance through meditation and spiritual connection, aiding emotional adaptation and recovery progress.', quotes=["'...internal state of nonresistance or peace ... it just kind of happened'", "'...watching symptoms but felt peace'"]), Code(slug='brain-nervous-sys-fatigue', name='Adopting brain and nervous system explanation for ME/CFS symptoms', description='Learning symptoms result from brain and nervous system stress response shifted participant from helplessness to empowerment to calm nervous system and improve symptoms.', quotes=["'...brain and nervous system processing stress ... not sick but stressed'", "'...brain generates pain fatigue because it senses danger'"]), Code(slug='self-compassion-recovery', name='Cultivating self-compassion to manage symptoms and aid recovery', description='Self-compassion reduces self-criticism that triggers stress and perpetuates symptoms, enabling emotional regulation and physical improvement.', quotes=["'...self criticism activates danger alarm in brain ... feeds symptoms'", "'...talk to myself in a compassionate way ... what do you want right now'"]), Code(slug='personality-traits-illness', name='Role of personality traits like perfectionism in illness experience', description='Traits like perfectionism, people-pleasing, conscientiousness and emotional suppression contribute to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.', quotes=["'perfectionist check, people pleasers check ... really conscientious'", "'holding the emotions ... like a pressure cooker'"]), Code(slug='emotional-processing-key', name='Acknowledging and processing emotions as key to recovery', description='Therapeutic practices like journaling and psychotherapy help express anger, grief and trauma, releasing emotional pressure contributing to nervous system hypervigilance and symptom worsening.', quotes=["'...some psychotherapy was helpful ... talk through griefs'", "'...journaling your anger ... bottled up anger can be very harmful'"]), Code(slug='validation-hope-connection', name='Finding validation and hope through empathetic connection', description='Talking with someone who understood illness and brain-based mechanisms offered crucial validation and hope, triggering energy and belief in recovery.', quotes=["'...spent three hours on phone ... finally heard the truth ... gave me hope'", "'...got up and ran around the block like never before'"]), Code(slug='energy-loss-fatigue', name='Energy loss and fatigue reducing daily activity', description='Participant experienced drop in energy and motivation, leading to extended rest periods and physical symptoms reflecting debilitating impact of CFS/long COVID.', quotes=["'...started to get really tired ... no motivation to do activities...'", "'...laying in bed would get canker sores ... not feeling the best'"]), Code(slug='frustration-medical-tests', name='Frustration from inconclusive medical investigations', description='Participant felt uncertain and doubtful when tests showed normal despite symptoms, leading to exploration of mental health explanations and self-doubt.', quotes=["'...multiple doctors said everything was perfectly fine ...'", "'...thought maybe something mentally causing this'"]), Code(slug='skepticism-brain-retraining', name='Initial skepticism towards brain retraining techniques', description='Participant doubted brain retraining programs at first, but upon commitment found them effective for symptom management and anxiety reduction.', quotes=["'...program has hypnosis type of effect ... initially skeptical'", "'...committed and made a difference'"]), Code(slug='mental-stamina-recovery', name='Importance of mental stamina for physical activity recovery', description='Mental stamina and positive mindset were crucial for progressing from basic function to running a 10k and training for a marathon, highlighting mental role in physical recovery.', quotes=["'...didn't have mental stamina to do that before...'", "'...positive affirmations and growth mindset...'"]), Code(slug='supportive-encouragement', name='Valuing supportive and personal encouragement during recovery', description='Encouragement and belief from recovery coach Jason boosted motivation and aided healing, illustrating importance of personal connection in recovery journey.', quotes=["'...text messages saying i climbed mountain ... i know you can do it'", "'...great having someone who believes in you that much...'"]), Code(slug='empowering-self-statements', name='Developing empowering self-statements to combat anxiety', description='Participant learned to replace disempowering anxiety statements with growth-oriented affirmations fostering positive and hopeful mindset for emotional resilience.', quotes=["'...saying i am anxious is disempowering ... say i am on my way to getting better'", "'...it's a journey rather than a stuck state...'"]), Code(slug='recovery-is-journey', name='Recognizing recovery as a journey, not a fixed state', description='Recovery involves ongoing management and coping rather than symptom absence, using tools to handle fluctuations and maintain progress without fear.', quotes=["'...have tools to fix that ... life is stressful ... i can refocus'", "'...journey ... can't keep comparing yourself...'"]), Code(slug='long-covid-frustration-isolation', name='Feeling frustrated and isolated due to long COVID limitations', description='Participants express frustration with ongoing symptoms and limitations from long COVID, feeling isolated and disconnected from prior healthy life and social connections.', quotes=["'...feel drained all the time ... used to be active now barely manage walk...'", "'...people don’t see struggle you go through ... makes you feel alone...'"]), Code(slug='desire-understanding-validation', name='Desire for understanding and validation from others', description='Participants strongly desire acknowledgement and belief in their long COVID and ME/CFS experience to reduce stigma and obtain emotional support.', quotes=["'...sometimes it feels like people think it’s in your head...'", "'...validation would mean the world ... proves not making this up...'"]), Code(slug='regain-physical-energy', name='Need to regain physical energy and return to normal function', description='Participants express longing to regain physical energy and resume routine activities without debilitating fatigue, describing simple tasks as exhausting.', quotes=["'...if i could get some energy back ... feel like myself'", "'...fatigue so overwhelming even making meal feels like climbing mountain...'"]), Code(slug='search-effective-treatment', name='Search for effective treatment and cures for symptom relief', description='Participants discuss ongoing search for treatments that relieve symptoms or bring recovery, facing frustration with lack of clear options and trial and error approaches.', quotes=["'...tried so many treatments but nothing works...'", "'...keep hoping for a cure to move on with life...'"]), Code(slug='coping-identity-changes', name='Coping with changes to identity and sense of self', description='Participants mourn their previous healthy self and struggle with new limitations and changed roles, affecting identity and self-concept.', quotes=["'...don’t recognize person i am now compared to before...'", "'...hard to accept not doing what used to do...'"]), Code(slug='anger-fight-flight', name='Anger as fight or flight physiology driving chronic pain', description='Anger is a survival physiological response generated by fight or flight sensations causing chronic pain deeply wired in nervous system, uncontrollable by conscious mind.', quotes=["'...biggest factor keeping people in pain is anger ... fight or flight sensation'", "'anger and anxiety are physiological survival responses ... no control'"]), Code(slug='pain-memory-neuroplasticity', name='Chronic pain as embedded memory in neuroplastic pain circuits', description='Chronic pain seen as permanent brain memory in pain circuits that cannot be erased; fighting pain reinforces it; acceptance allows separation and symptom reduction.', quotes=["'...pain circuits absolutely permanent like phantom limb pain'", "'...fighting pain reinforces it; you learn to separate yourself from pain'"]), Code(slug='unconscious-brain-survival', name='Unconscious brain drives survival responses and chronic symptoms', description='Unconscious brain processes vast information to keep alive, chronic symptoms arise from physiological threat states beyond conscious control, explaining difficulty managing illness consciously.', quotes=["'...unconscious brain keeps you alive ... conscious brain only small part'", "'...can't control it like dragging with handbrakes'"]), Code(slug='letting-go-fighting-pain', name='Letting go of fighting pain as crucial to healing process', description='Healing requires shifting from fighting pain to letting go and acceptance, reducing reinforcement of pain circuits and creating new neural pathways supporting life on own terms.', quotes=["'...hardest part is people can't help but try to fix themselves'", "'...learn to separate yourself from pain and get on with life'"]), Code(slug='threat-physiology-chronic-symptoms', name='Threat physiology underlies chronic mental and physical symptoms', description='Chronic symptoms including pain, anxiety and depression stem from sustained threat physiology causing nervous system hyperactivity and inflammation, requiring calming physiology rather than only treating symptoms.', quotes=["'...every chronic disease related to chronic stress'", "'...anxiety depression bipolar ocd schizophrenia are metabolic inflammatory disorders'"]), Code(slug='separating-negative-thoughts', name='Separating oneself from negative and repetitive thoughts', description='Separating identity from negative intrusive thoughts using therapies reduces physiological arousal caused by thoughts that fuel anxiety and pain.', quotes=["'...separate from the thoughts that's where behavior therapy comes into play'", "'...direct relationship between thoughts and suicide attempts'"]), Code(slug='nurturing-joy-healing', name='Nurturing joy as a vital part of healing journey', description='Joy through positive experiences and relationships supports healing by building new neural pathways, countering threat physiology and enabling flourishing beyond pain.', quotes=["'...nurture joy if you’re fighting stress not possible'", "'...good food good wine good friends promote healing'"]), Code(slug='sleep-diet-exercise-nervous-system', name='Importance of sleep diet and exercise for calming nervous system', description='Sleep, diet and exercise foundational for calming nervous system, regulating physiology, reducing inflammation and supporting healing and regeneration.', quotes=["'...address sleep is number one...'", "'...lack of sleep causes chronic back pain not the way around'"]), Code(slug='physiology-over-consciousness', name="Physiology's dominance over conscious brain in symptom experience", description='Physiological nervous system responses overpower conscious brain’s control of symptoms; fight or flight inhibits cognitive function, making conscious efforts insufficient alone.', quotes=["'...half a million times stronger than conscious brain'", "'...highest thinking brain neocortex doesn’t work in fight or flight'"]), Code(slug='skepticism-starting-point-healing', name='Using skepticism as a starting point to engage in healing', description='Skepticism is a valid initial stance for learning new healing approaches, encouraging connection to experience and curiosity rather than blind belief to gradually shift physiology and symptoms.', quotes=["'...don't believe me ... connect to skepticism ... starting point'", "'...start doing the work now letting your brain change'"]), Code(slug='book-key-pain-recovery', name='Book as key to chronic pain recovery approach', description='A specific book was pivotal for understanding and recovery from chronic pain, resonating with symptoms and personality, influencing therapeutic career choice.', quotes=["'...book by john sono ... back pain gone ... health problems went away'", "'...personality characteristics true for me and most clients'"]), Code(slug='emotion-focused-pain-therapy', name='Emotion-focused therapy as core to pain recovery process', description='Intensive Short-Term Dynamic Psychotherapy (ISTDP) is central for chronic pain recovery, focusing on accessing and processing suppressed emotions like anger and rage causing physical pain.', quotes=["'...core intervention is emotion focused approach ... all emotions healthy'", "'...therapy helps notice bodily tension often anxiety about anger or rage'"]), Code(slug='therapy-engagement-barriers', name='Barriers to engaging with emotion-focused therapy include fear and trust issues', description='Patients face fears and defenses that hinder engagement with emotion-focused therapy; require gradual emotional exposure and support to lower defenses and benefit from treatment.', quotes=["'...some folks work quickly others more complicated with challenges'", "'...ISTDP difficult but supportive ... gradual emotional threshold building'"]), Code(slug='professional-acceptance-therapy', name='Growing acceptance of emotion-focused therapy among medical professionals', description='Medical community increasingly recognizes and integrates emotion-focused therapy for chronic pain, with training, referrals, and scientific support increasing over time.', quotes=["'...most folks come because they accept this approach'", "'...training doctors in local hospital ... growing recognition'"]), Code(slug='mindset-shift-therapy-acceptance', name='Mindset shift required for accepting therapy as part of recovery', description='Acceptance of therapy requires paradigm shift from seeing mental health as separate to integrating physical and emotional health, moving from coping to true recovery path.', quotes=["'...mental health and physical health often thought separate'", "'...therapy seen as coping not to get better initially'"]), Code(slug='emotions-source-physical-pain', name='Understanding emotions as the source of physical pain', description='Emotions, especially unacceptable or dangerous ones, are converted into physical symptoms such as chronic pain; MRI research supports this process, validating psychological origins and need for emotional therapy.', quotes=["'...strategies to ward off dangerous emotions turned into physical pain'", "'...chronic pain brains light up amygdala responsible for anger and rage'"])] Preliminary themes: themes=[Theme(name='Experiencing relentless fatigue and energy crashes with post-exertion collapse', description='Participants describe extreme exhaustion where standing up or doing basic activities leads to complete energy drain, necessitating long periods of bed rest and causing severe impact on daily functioning, including being bedridden for months. This persistent fatigue cycles with relapses particularly after overexertion, underscoring the debilitating nature of their conditions.', code_slugs=['persistent-fatigue-and-energy-drain', 'overexertion-and-relapse-cycle', 'relentless-pushing-despite-limitations']), Theme(name='Struggling to accept illness limits while refusing to give up hope', description='Participants reveal a tension between denial and acceptance of chronic illness limitations. They maintain a positive and obstinate mindset, resisting the notion of permanent disability. Despite setbacks and long-term fatigue, they sustain hope, learning lifestyle changes and gradual self-awareness to manage symptoms while holding onto the belief of eventual remission rather than cure.', code_slugs=['realization-to-accept-lifestyle-changes', 'maintaining-hope-and-positivity-despite-chronic-illness', 'self-awareness-to-avoid-overexertion']), Theme(name='Embracing brain retraining programs to regain control and recovery', description="Participants initially skeptical of brain-based recovery methods, come to accept and engage with brain retraining that addresses protective 'fight or flight' responses encoded in the body’s genes. They find validation and structured approaches that enable confidence and early positive signs, with brain retraining experienced as a crucial part of their recovery journey and self-healing process.", code_slugs=['brain-retraining-as-a-recovery-path']), Theme(name='Learning boundaries and managing social demands to conserve energy', description='Participants emphasize the importance of setting clear boundaries to avoid energy depletion, such as letting non-essential calls go to voicemail and managing people-pleasing tendencies. They highlight struggle and growth in learning to say no and delay tasks, balancing social demands with personal health needs to prevent relapse and better manage chronic fatigue symptoms.', code_slugs=['learning-boundaries-to-manage-energy']), Theme(name='Difficulty with genuine rest and retraining habits for meaningful relaxation', description="Participants report difficulty with standard relaxation and meditation practices, struggling to let go and genuinely rest. They describe the challenge of retraining their minds to value and consistently implement 'real rest' like naps or meditation, essential for recovery but alien to ingrained habits and mental states shaped by chronic fatigue.", code_slugs=['difficulty-with-relaxation-and-rest']), Theme(name='Frustration and emotional challenges from others misunderstanding illness and recovery', description='Participants express ongoing emotional struggle when others minimize or fail to understand their illness experience and recovery process. They describe feelings of frustration, flaring up, and limited patience with ignorance or misjudgment, especially from those who never had the illness or who challenge their lifestyle adaptations, revealing a significant social and psychological burden.', code_slugs=['frustration-with-misunderstanding-by-others'])] themes=[Theme(name='Seeking comprehensive healing beyond individual MECFS symptom treatments', description='Participants expressed the importance of a holistic recovery approach, supporting the body as a whole rather than targeting specific symptoms. They found that symptom management provided only palliative relief and was insufficient for healing. Focusing too much on isolated symptoms was overwhelming and not helpful, while a broad, integrated strategy led to gradual overall improvement and resolution of symptoms.', code_slugs=['holistic-recovery-focus-mecfs', 'symptom-management-as-palliation-not-cure']), Theme(name='Feeling frustrated and disillusioned by symptom-specific research and treatments', description='Participants shared feelings of desperation and disappointment from extensively researching specific symptoms and fixes, including costly, risky, and ineffective treatments. They experienced emotional exhaustion after repeated failures to find symptom-specific cures. This led to recognition that a more comprehensive healing strategy was necessary beyond attempting to stop symptoms one-by-one.', code_slugs=['frustration-with-symptom-focused-help-seeking', 'holistic-recovery-focus-mecfs']), Theme(name='Wanting hopeful reassurance through symptom and recovery comparisons but finding it unproductive', description='Participants desired to compare their symptoms and recovery stories with others to find hope and reassurance. However, the wide variability of MECFS symptoms made such comparisons misleading and discouraging. They emphasized the importance of recognizing individual differences and cautioned against overreliance on symptom matching or blood test comparisons to predict recovery chances or treatment success.', code_slugs=['symptom-comparison-limitations']), Theme(name='Needing personalized recovery plans tailored to individual symptoms, lifestyle, and journeys', description='Participants highlighted that recovery from MECFS must be deeply personal, with plans tailored to individuals’ unique symptoms, severity, life circumstances, and experiences. They stressed that pacing and treatments should be customized rather than adopting a one-size-fits-all approach. Building recovery plans based on one’s own body and intuition fosters empowerment and supports more effective healing paths.', code_slugs=['need-for-personalized-recovery-plans']), Theme(name='Setting emotional boundaries to protect well-being when discussing difficult symptoms', description='Participants recognized the emotional toll of revisiting and discussing past symptoms through one-on-one conversations and social media interactions. They emphasized establishing boundaries to avoid overwhelming situations, protect mental health, and preserve personal space. Despite the desire to share recovery stories and receive positive feedback, they found discussions about symptoms often retraumatizing, requiring limits on symptom-focused exchanges.', code_slugs=['emotional-boundaries-around-symptom-discussion'])] themes=[Theme(name='Deep gratitude and awe for renewed life after chronic illness recovery', description='This theme captures the participant\'s overwhelming sense of gratitude and amazement about living a life once only dreamed of due to chronic illness recovery. They describe moments of feeling like a "walking miracle," appreciating life with childlike wonder, and maintaining joy despite setbacks. This theme highlights how the participant values each day as a precious victory and reflects a profound shift in perspective and appreciation for life.', code_slugs=['walking-miracle-gratitude-for-life-38']), Theme(name='Struggle with detachment from healthy friends who take wellness for granted', description='Participants feel a sense of detachment and difficulty relating to friends who have never experienced chronic illness, especially when those friends complain about life or neglect physical health. The participant misses activities like working out and struggles to understand those who are able but unwilling to engage in wellness. This theme reflects the emotional distance and isolation felt in social relationships post-illness recovery.', code_slugs=['difficulty-relating-to-healthy-friends-81']), Theme(name='Frustration over medical misdiagnosis and delayed recognition of chronic fatigue symptoms', description='The participant recounts the prolonged and frustrating journey through misdiagnosis and dismissal by medical professionals, initially diagnosed with fibromyalgia while fatigue symptoms were overlooked. This theme underscores the experience of receiving little help or understanding over many years, contributing to a sense of neglect and uncertainty in the healthcare process.', code_slugs=['diagnosis-delay-and-misdiagnosis-60']), Theme(name='Active self-advocacy and persistence in seeking knowledgeable healthcare providers', description="This theme reflects the participant's proactive efforts to manage their health through self-rehabilitation, researching physicians, relocating for better care, and collaborating with investigative providers. The participant describes working with specialists who carefully examined underlying infections and genetic factors, showing determination and resourcefulness in overcoming healthcare system challenges.", code_slugs=['self-advocacy-for-healthcare-72', 'genetic-condition-discovery-and-treatment-75']), Theme(name='Major lifestyle changes including diet, movement, and toxin avoidance for healing', description='Participants undertake drastic modifications such as elimination diets targeting dairy, gluten, sugar, and nightshades, coupled with gentle movement therapies and removal of environmental toxins. This theme captures the careful, individualized approach to healing through body-focused changes and gradual physical rehabilitation, emphasizing patience and persistence in recovery.', code_slugs=['drastic-lifestyle-changes-for-recovery-81', 'overcoming-sugar-addiction-for-healing-56', 'movement-therapy-as-gentle-rehab-63']), Theme(name='Personal transformation and spiritual growth through chronic illness experience', description='This theme highlights the profound psychological and spiritual shifts participants undergo, including humility, acceptance of help, redefined self-worth beyond career achievements, and a deepened faith. The illness is seen as a catalyst for personal growth, reshaping identity and spirituality, fostering gratitude, and instilling new values about life and relationships.', code_slugs=['psychological-impact-and-growth-from-illness-80', 'self-empowerment-through-knowledge-and-faith-64']), Theme(name='Anxiety and self-compassion in distinguishing pregnancy symptoms from relapse fears', description='Participants describe the anxiety of interpreting pregnancy-related symptoms such as fatigue and headaches within the context of past chronic illness. They emphasize the need to differentiate normal pregnancy experiences from illness relapse, practicing self-compassion and cautious optimism, while acknowledging the triggering nature of these symptoms.', code_slugs=['fear-and-anxiety-during-pregnancy-after-illness-64']), Theme(name='Hope inspired by recovery stories and community connection in chronic illness', description="This theme reflects the vital role of witnessing others' recovery journeys in maintaining hope and motivation. Participants stress the loneliness and despair without such examples, and the importance of shared experiences and community support for sustaining perseverance through the difficult, long recovery process of chronic illness.", code_slugs=['hope-and-positivity-in-chronic-illness-recovery-57'])] themes=[Theme(name='Overwhelming fear and isolation at initial chronic fatigue onset', description='Participants describe the early stages of chronic fatigue as a scary and confusing experience, feeling a bit fluy, strange, and scared. They face emotional challenges, grief and uncertainty as symptoms emerge without clear diagnosis, compounded by isolation from friends and the university environment. The loss of normal activities and social contact leads to a tough, lonely time where only family remains as support.', code_slugs=['scary-and-confusing-early-illness-experience', 'feeling-isolated-due-to-illness']), Theme(name='Struggling with misdiagnosis and longing for real understanding', description='Participants recount early experiences of medical dismissal, such as doctors attributing symptoms solely to depression. They recognize the emotional impact but feel there is more going on physically. This misunderstanding leads to frustration and a strong desire to find real explanations and effective healing approaches beyond conventional medicine.', code_slugs=['rejection-of-depression-diagnosis-and-emotional-awareness']), Theme(name='Clinging to hope through meditation and fragmented relief efforts', description='Engaging in meditation, yoga, breath work, and guided relaxation offers participants temporary relief and moments of feeling better, providing hope that some control over their health is possible. Yet, these benefits are often short-lived and unstable, requiring ongoing effort to find deeper shifts in recovery.', code_slugs=['hope-from-meditation-and-yoga-practices']), Theme(name='Desperation spurs trying diverse alternative therapies seeking cure', description='Out of urgency to recover, participants try multiple alternative therapies such as acupuncture, reiki, nutrition therapy, and even colon hydrotherapy, often with mixed or limited success. This represents a willingness to explore all possible avenues despite invasiveness or skepticism, driven by a deep yearning to reclaim health.', code_slugs=['desperation-leads-to-trying-various-alternative-therapies']), Theme(name='Uncovering and releasing suppressed anger and old trauma for healing', description='Participants identify profound suppression of anger and unresolved trauma as pivotal barriers to recovery. Recognizing patterns of avoiding conflict and holding unexpressed emotions leads to emotional breakthroughs. This process helps participants address the mind-body connection and understand physical symptoms as manifestations of trauma responses, enhancing self-awareness and healing potential.', code_slugs=['realization-of-suppressed-anger-and-unresolved-trauma', 'mind-body-connection-and-trauma-understanding']), Theme(name='Learning to communicate authentically while setting healthy boundaries', description='Recovery journeys involve participants learning how to be authentic in expressing their feelings and needs without fearing upsetting others. Non-violent communication and boundary-setting skills help them balance self-care and relationships, moving from suppression to gentle assertiveness and honoring personal needs.', code_slugs=['learning-authentic-self-expression-and-setting-boundaries']), Theme(name='Integrating profound spiritual awakenings and meditation challenges', description="Spiritual experiences such as kundalini awakening, mystical meditation, and out-of-body sensations play a significant but destabilizing role in participants' recovery. While these moments connect them deeply to the universe and provide meaningful insights, they sometimes interfere with daily functioning, necessitating a balance between spiritual growth and practical life demands.", code_slugs=['spiritual-experience-as-part-of-healing-journey']), Theme(name='Sustained self-care and emotional regulation beyond recovery', description='Even years after initial healing, participants continue to manage emotional, trauma-related, or dissociative symptoms through therapeutic work, nature exposure, and self-regulation techniques. This ongoing effort ensures balance and well-being remains, reflecting an enduring commitment to health maintenance and vigilance against relapse.', code_slugs=['ongoing-self-care-and-regulation-post-recovery']), Theme(name='Healing journey inspires career change into coaching and therapy work', description="The prolonged recovery experience deeply influences participants' career paths, leading them to pursue therapeutic coaching, bodywork, and modalities like internal family systems. They integrate personal healing insights professionally, remaining lifelong learners who apply supportive practices to help others on their health journeys.", code_slugs=['career-shift-driven-by-healing-experience']), Theme(name='Recognizing ancestral trauma’s influence on illness and healing paths', description='Participants acknowledge the impact of ancestral and family lineage trauma on chronic fatigue development and recovery. They observe that illness can be rooted in wider family systems rather than just personal history, gaining awareness of generational health patterns and employing family constellation approaches to understand systemic illness dynamics.', code_slugs=['recognizing-familial-and-ancestral-trauma-impact-on-health'])] themes=[Theme(name='Overwhelming fear and devastation from ME/CFS diagnosis and limited medical support', description="After the participant's diagnosis of chronic fatigue syndrome, they felt terrified and devastated, describing it as a death or life sentence with no known cure. The participant recalls bawling and feeling hopeless when doctors confirmed no cure and a need to live with symptoms, leading to a profound emotional struggle and sense of lost future, despite relief at having a diagnosis to explain their decline.", code_slugs=['fear-and-uncertainty-after-diagnosis']), Theme(name='Frustration and resentment from imposed restrictive diets and treatments lacking personal control', description='The participant experienced misery and resentment towards strict elimination diets and numerous supplements that were recommended by doctors and natural health practitioners without their input. Feeling like these interventions were being done to them rather than with them, the participant felt these measures perpetuated trauma and hindered healing because they lacked agency and were not tailored to their needs or preferences.', code_slugs=['resentment-towards-prescribed-diets', 'regaining-agency-in-healing']), Theme(name='Physical symptoms triggered by trauma and sustained by nervous system hypervigilance and emotional stress', description="The initial trigger for the participant's illness was a traumatic sexual assault followed by infection and physical collapse, causing classic ME/CFS symptoms including 24/7 flu-like exhaustion, insomnia, brain fog, and digestive issues. This theme highlights how unresolved trauma and ongoing psychological stress maintained neurological hypervigilance, perpetuating symptoms through the brain and nervous system's stress responses despite absence of identifiable physical damage.", code_slugs=['trauma-led-health-crisis', 'brain-based-explanation-for-fatigue-symptoms']), Theme(name='Finding mental peace and spiritual connection to endure symptoms and support recovery', description='Despite persistent severe symptoms, the participant attained states of mental peace and nonresistance through meditation, yoga, and spiritual practices. This deep inner calmness and connection to something greater enabled the participant to observe symptoms without emotional turmoil, serving as a vital coping mechanism and foundation for emotional healing over their long recovery journey.', code_slugs=['mental-peace-despite-physical-symptoms']), Theme(name='Healing through emotional processing, self-compassion, and releasing bottled emotions', description='Addressing emotional grief, trauma, and suppressed anger through psychotherapy, journaling, and self-compassion was crucial to the participant’s recovery. Embracing kindness toward oneself softened the blow of symptoms and reduced self-criticism that activated the brain’s danger signals. Expressive writing and emotional release helped alleviate the pressure cooker effect of holding in feelings, allowing nervous system recalibration.', code_slugs=['self-compassion-supporting-recovery', 'importance-of-emotional-processing', 'impact-of-personality-on-symptom-perpetuation']), Theme(name='Validation and hope from empathetic connection and new understanding of illness', description='A pivotal experience was a long conversation with someone who truly understood the illness and explained the brain and nervous system’s role in perpetuating symptoms. This validation from empathetic connection sparked a spontaneous remission and instilled a profound belief in the possibility of recovery. It shifted the participant’s perspective from helplessness to hopeful empowerment by conveying that recovery is possible through calming the nervous system.', code_slugs=['validation-and-hope-from-connection'])] themes=[Theme(name='Experiencing energy loss and frustration from inconclusive medical answers', description='Participant felt a noticeable drop in energy and motivation, describing how fatigue led to extended rest and physical symptoms like canker sores. Despite visiting doctors who confirmed their vitals and blood work as normal, the participant experienced frustration and doubt, exploring mental health as a possible cause, highlighting the emotional uncertainty accompanying unexplained symptoms.', code_slugs=['energy-loss-and-fatigue-in-cfs-long-covid', 'frustration-of-inconclusive-medical-tests']), Theme(name='Initial doubts and subsequent trust in brain retraining healing techniques', description='Participant was initially skeptical about hypnosis and brain retraining methods offered by the program but found commitment to these techniques effective for symptom relief and anxiety management. The journey from doubt to acceptance shows a shift in mindset, embracing unconventional healing that fundamentally changed their approach to recovery.', code_slugs=['initial-skepticism-of-brain-retraining-technique']), Theme(name='Building mental stamina and positive mindset for physical recovery challenges', description='The participant highlighted the importance of developing mental stamina and adopting positive affirmations, enabling progression from basic daily functioning to running 10K races and training for marathons. This growth mindset and empowerment were pivotal in sustaining motivation and embracing physical challenges beyond previous limits.', code_slugs=['importance-of-mental-stamina-for-active-recovery']), Theme(name='Finding motivation through personal encouragement and belief from support', description='Participant valued the personalized, encouraging support they received from their coach, which boosted motivation and belief in recovery despite ongoing challenges. Regular texts and genuine belief from someone invested, even as a stranger, made a meaningful difference in maintaining hope and progress.', code_slugs=['valuing-supportive-encouragement-in-recovery']), Theme(name='Adopting empowering self-talk to transform anxiety into recovery progress', description="The participant discovered replacing disempowering anxiety statements with affirmations like 'I am on my way to getting better' fostered a positive, hopeful mindset. This shift transformed their experience of anxiety from feeling stuck to seeing it as a stage in an ongoing health journey, supporting emotional resilience.", code_slugs=['developing-empowering-self-statements']), Theme(name='Accepting recovery as a continuous journey with tools for setbacks', description='Participant recognized recovery as an ongoing journey rather than a fixed, fully cured state, understanding that life will bring stress and anxious moments. They emphasized having tools to manage symptoms and refocus, cultivating confidence to maintain progress and face fluctuations without fear or discouragement.', code_slugs=['recognizing-the-journey-of-recovery-not-a-fix'])] themes=[Theme(name='Living with isolation and frustration from long COVID symptoms', description="This theme captures participants' feelings of being drained and disconnected due to persistent symptoms that limit physical and social activities. They express frustration with ongoing symptoms that drag them down and the emotional toll of feeling alone because others don't see or understand their daily struggle.", code_slugs=['long-covid-frustration-and-isolation']), Theme(name='Seeking empathy and validation from family, doctors, and society', description='Participants strongly desire recognition and belief in their experiences with long COVID and ME/CFS. They emphasize how validation from doctors, family, and others is crucial to reduce feelings of stigmatization and misunderstanding, providing essential emotional support and helping them feel that their condition is real and acknowledged.', code_slugs=['desire-for-understanding-and-validation']), Theme(name='Yearning to recover physical strength and resume normal activities', description='There is a poignant longing among participants to regain lost physical energy and return to activities they once enjoyed, such as jogging, playing with children, and routine tasks. The overwhelming fatigue makes even simple tasks difficult, and participants express a strong need to feel like themselves by restoring their physical function and vitality.', code_slugs=['need-to-regain-physical-energy-and-function']), Theme(name='Persistent search for treatments that bring relief and hope for cure', description='Participants describe the emotional toll of trying many treatments without success, expressing heartbreak and disappointment. They maintain hope for an effective cure or therapy that will relieve symptoms, stop the pain and fatigue, and allow them to move forward with life beyond their illness.', code_slugs=['search-for-effective-treatment-and-cures']), Theme(name='Struggling with sense of self and identity after illness onset', description="This theme reflects participants' internal conflict as they mourn their healthy pre-illness identity and grapple with new limitations that alter their roles and self-perception. They speak to the difficulty of accepting these changes and feeling like they have lost their former selves amid the chronic illness experience.", code_slugs=['coping-with-identity-changes'])] themes=[Theme(name='Experiencing anger and anxiety as uncontrollable physiological survival responses', description="Participants experience anger and anxiety not as psychological issues but as automatic fight or flight sensations generated by their body. These physiological survival responses drive chronic pain and related symptoms, overpowering conscious control and leading to deep frustration and feeling trapped by their body's intense reactions and threat states.", code_slugs=['anger-fight-flight-physiology-chronic-pain', 'threat-physiology-explains-chronic-symptoms', 'role-of-physiology-over-conscious-control']), Theme(name='Living with chronic pain as a persistent brain-embedded memory and changing the pain relationship', description='Participants perceive chronic pain as an embedded memory circuit in their brain that cannot be erased, similar to phantom limb pain. Fighting this pain reinforces the circuits, but by separating themselves from the pain and accepting it, they begin to transcend the pain and create new neural pathways, enabling them to live on their own terms despite persistent symptoms.', code_slugs=['chronic-pain-neuroplasticity-memory-pain-circuits', 'letting-go-fighting-pain-key-to-healing']), Theme(name='Struggling with repetitive negative thoughts and learning to separate from them to reduce distress', description='Participants face distressing repetitive negative thoughts that fuel anxiety and chronic symptoms. They describe using tools like expressive writing and mindfulness to separate their identity from these thoughts, reducing physiological arousal and suffering. This process is crucial to breaking cycles of mental rigidity and anger that block healing.', code_slugs=['separation-from-negative-thoughts-in-pain']), Theme(name='Finding joy and safety as essential pathways to healing beyond pain and stress', description='Participants emphasize nurturing joy through positive experiences, relationships, and a playful curious attitude to counterbalance threat physiology. They find that embodying safety physiology by managing nervous system stress, prioritizing sleep, diet, and exercise, and interpersonal support creates a state where the body can heal itself and symptoms resolve, enabling a thriving life beyond chronic illness.', code_slugs=['nurturing-joy-for-chronic-pain-healing', 'importance-of-sleep-diet-exercise-in-nervous-system-calm']), Theme(name='Embracing skepticism and curiosity as starting points for holistic healing engagement', description='Participants express that embracing skepticism rather than blind belief is an important initial step. Connecting with one’s doubts encourages curiosity and open-minded learning, which helps people engage in the self-directed skill acquisition needed to calm their physiology, interrupt negative cycles, and progress towards symptom improvement and healing.', code_slugs=['skepticism-as-starting-point-for-healing-engagement']), Theme(name='Understanding unconscious brain dominance in managing chronic symptoms and survival', description='Participants highlight how the unconscious brain processes millions of bits of sensory information per second to maintain survival and drive responses that the conscious brain cannot override. This explains the difficulty in controlling chronic symptoms through willpower alone, as unconscious physiological threat states dominate symptom experience and reactions.', code_slugs=['role-of-unconscious-brain-in-survival-and-pain'])] themes=[Theme(name='Discovering hope and healing through transformative recovery books', description="Participants express a profound sense of hope and inspiration upon discovering pivotal recovery books, such as Dr. John Sarno's work, that deeply resonate with their symptoms and personality traits. These books not only helped them overcome chronic pain and other health issues but also shaped their therapeutic journeys, offering an accessible entry point to understanding their complex experiences and fostering meaningful change.", code_slugs=['book-as-key-to-chronic-pain-recovery']), Theme(name='Experiencing core healing by accessing and processing suppressed emotions', description='Participants describe their emotional healing journey centered on emotion-focused therapy, particularly ISTDP, which enables them to safely access, experience, and process suppressed emotions like anger and rage. This process reveals how physical pain manifests from blocked emotions, helping them develop new emotional capacities and gradually dismantle defense mechanisms, ultimately leading to physical and emotional relief.', code_slugs=['emotion-focused-therapy-for-pain', 'emotions-understood-as-physical-pain-source']), Theme(name='Facing challenges of fear and distrust in engaging deeply with therapy', description='Participants share the difficulties in engaging with intensive emotion-focused therapy, noting fears, defensive behaviors, and trust issues that create barriers. They emphasize the slow and supportive process needed to expand their emotional thresholds while avoiding setbacks, highlighting the hard work involved in gradually confronting painful emotions that are integral to recovering from chronic pain.', code_slugs=['barriers-to-therapy-engagement-and-trust']), Theme(name='Feeling validated and hopeful from growing medical recognition of pain therapy', description='Participants feel encouraged and validated as emotion-focused therapy gains acceptance among medical professionals, contrasting with earlier stigma. They describe increased doctor referrals, training opportunities, and scientific research backing, which fosters hope for broader systemic change and better integration of effective approaches into mainstream medical practice for chronic pain and related conditions.', code_slugs=['transformation-in-professional-acceptance']), Theme(name='Adapting mindset to accept therapy as essential part of physical healing', description='Participants reflect on the difficult yet crucial mental shift from viewing therapy as mere coping to recognizing it as an essential healing route. This shift involves breaking down the false divide between mental and physical health and embracing an integrated approach. They recount how this changed perspective enables them to commit more fully to emotion-focused treatments as pathways to recovery beyond just symptom management.', code_slugs=['mindset-shift-needed-for-therapy-acceptance'])] Produce a single list of themes in the correct format, covering all the themes identified. Use the tools. Always use the tools/JSON response. ```json
{‘themes’: [{‘name’: ‘experiencing relentless fatigue and energy crashes leading to debilitating daily function loss’, ‘description’: ‘Participants describe severe exhaustion triggered by minimal physical activity, such as standing, causing complete energy depletion that leads to prolonged bed rest and inability to perform basic tasks. This relentless fatigue often worsens through overexertion, causing relapses that significantly disrupt their day-to-day functioning and independence.’, ‘code_slugs’: [‘persistent-fatigue-energy’, ‘overexertion-relapse-cycle’, ‘pushing-through-fatigue’]}, {‘name’: ‘struggling with chronic illness limits while maintaining hope and adjusting lifestyle’, ‘description’: ‘Participants experience tension between initially denying their condition and accepting the need for significant lifestyle changes. They emphasize maintaining positive, hopeful mindsets and learning to set personal boundaries to manage energy, avoid overcommitment, and prevent relapse while gradually adapting to the chronic illness realities.’, ‘code_slugs’: [‘acceptance-lifestyle-changes’, ‘hope-positivity-chronic-illness’, ‘self-awareness-overexertion’, ‘setting-boundaries-energy’]}, {‘name’: ‘embracing brain retraining and nervous system calming for symptom control and recovery’, ‘description’: ‘Skepticism shifts to trust in brain retraining programs that address fight or flight responses embedded in the nervous system, enabling participants to gain control, reduce anxiety, and observe improvements. These approaches are embraced as fundamental parts of recovery, complementing emotional regulation and nervous system calming strategies.’, ‘code_slugs’: [‘brain-retraining-recovery’, ‘brain-nervous-sys-fatigue’, ‘skepticism-brain-retraining’, ‘skepticism-starting-point-healing’]}, {‘name’: ‘difficulties with genuine rest and relaxation practices essential for recovery’, ‘description’: ‘Participants struggle to implement real rest and authentic relaxation, such as meditation or naps, finding it challenging to override ingrained habits and mental resistance. Learning to genuinely relax is necessary and transformative but remains a persistent challenge in managing ongoing fatigue and symptoms.’, ‘code_slugs’: [‘difficulty-relaxing-rest’]}, {‘name’: ‘emotional struggle from social misunderstandings requiring boundaries to protect well-being’, ‘description’: ‘Frustrations arise from others’ misunderstanding and minimizing of their illness, often triggering anger and emotional distress. Participants describe the necessity of setting emotional boundaries around discussing symptoms and managing social interactions to protect mental health and maintain recovery progress.’, ‘code_slugs’: [‘anger-misunderstanding-others’, ‘emotional-boundaries-symptoms’]}, {‘name’: ‘valuing holistic recovery over symptom-specific treatments to foster comprehensive healing’, ‘description’: ‘Participants highlight that focusing exclusively on symptom management offers only temporary relief. Embracing a holistic approach supporting the entire body leads to more meaningful recovery. Symptom-specific fixes are often frustrating and disillusioning, emphasizing the need for integrated, personalized recovery strategies.’, ‘code_slugs’: [‘holistic-recovery-focus’, ‘symptom-management-palliation’, ‘frustration-symptom-fix’]}, {‘name’: ‘recognizing the need for personalized recovery plans tailored to unique illness journeys’, ‘description’: ‘Recovery must be individually customized considering unique symptoms, lifestyles, and wellness paths. Participants stress that pacing, treatments, and strategies must be flexible and personally relevant to empower their healing journey effectively, avoiding generic or one-size-fits-all approaches.’, ‘code_slugs’: [‘personalized-recovery-plans’]}, {‘name’: ‘deep gratitude for renewed life and profound relationship changes after illness recovery’, ‘description’: ‘Experiencing recovery, participants express overwhelming gratitude and awe, describing feelings like a “walking miracle.” They reflect joy and appreciation for daily life and relationships while acknowledging challenges in reconnecting with healthy peers and adjusting social dynamics post-illness.’, ‘code_slugs’: [‘walking-miracle-gratitude’, ‘difficulty-relating-healthy’]}, {‘name’: ‘challenge and resilience through medical misdiagnosis prompting strong self-advocacy’, ‘description’: ‘Frustration from delayed or incorrect diagnoses leads participants to take active roles in their healthcare by researching providers, seeking knowledgeable specialists, and discovering underlying conditions. This self-advocacy is crucial to accessing effective treatments and regaining control over their health.’, ‘code_slugs’: [‘diagnosis-delay-misdiagnosis’, ‘self-advocacy-healthcare’, ‘genetic-mitochondrial-treatment’]}, {‘name’: ‘undertaking drastic lifestyle changes including diet, movement, and toxin avoidance for healing’, ‘description’: ‘Participants commit to significant life alterations, such as elimination diets, gentle movement therapy, and reducing environmental toxins. Overcoming challenges like sugar addiction, they carefully pace their rehabilitation to support inflammation reduction and sustainable recovery.’, ‘code_slugs’: [‘drastic-lifestyle-changes’, ‘overcoming-sugar-addiction’, ‘movement-therapy-gentle-rehab’]}, {‘name’: ‘transforming through psychological growth, spiritual awakening, and enhanced self-expression’, ‘description’: ‘The chronic illness journey fosters deep psychological and spiritual transformation. Participants gain humility, acceptance, and a renewed sense of self, employing authentic communication and boundary-setting skills. Spiritual experiences sometimes challenge daily life but contribute significantly to healing and personal development.’, ‘code_slugs’: [‘psychological-growth-illness’, ‘spiritual-experience-healing’, ‘authentic-self-expression’, ‘self-empowerment-knowledge-faith’]}, {‘name’: ‘managing anxiety related to pregnancy symptoms with self-compassion and cautious optimism’, ‘description’: ‘Participants face fear and anxious uncertainty interpreting pregnancy symptoms through the lens of past illness. They learn to differentiate normal pregnancy experiences from relapse signs, cultivating self-kindness and cautious hope to navigate this emotional terrain safely.’, ‘code_slugs’: [‘pregnancy-anxiety-relapse’]}, {‘name’: “inspired hope and community support from witnessing others’ recoveries”, ‘description’: ‘Seeing others improve and connect with supportive communities provides vital hope to participants, reducing loneliness and sustaining motivation. Shared experiences validate their journey, fostering perseverance and faith in eventual improvements despite chronic challenges.’, ‘code_slugs’: [‘hope-positivity-others-recover’, ‘validation-hope-connection’]}, {‘name’: ‘early illness shock and isolation amidst misunderstood symptoms and lack of diagnosis’, ‘description’: ‘Participants recount a frightening onset of chronic fatigue characterized by confusion, isolation from friends and usual environments, and emotional distress. Misdiagnoses and being dismissed as depressed amplify feelings of misunderstanding and loneliness during critical early stages.’, ‘code_slugs’: [‘scary-confusing-early-illness’, ‘feeling-isolated-illness’, ‘reject-depression-diagnosis’]}, {‘name’: ‘desperation fuels trial of varied alternative therapies seeking relief and recovery’, ‘description’: ‘Driven by urgency and hope, participants experiment with multiple complementary therapies including acupuncture, reiki, nutrition, and colon hydrotherapy. Though outcomes vary, this exploration reflects a willingness to try diverse methods amid limited conventional options.’, ‘code_slugs’: [‘desperation-trying-therapies’]}, {‘name’: ‘unlocking healing by addressing suppressed anger, trauma, and mind-body connections’, ‘description’: ‘Recognition and processing of unresolved anger, trauma, and stress patterns emerge as central to recovery. Participants link physical symptoms to emotional blocks and trauma manifestations, employing mind-body frameworks to facilitate breakthroughs and alleviate symptom severity.’, ‘code_slugs’: [‘suppressed-anger-trauma’, ‘mindbody-trauma-understanding’]}, {‘name’: ‘engaging in emotion-focused therapy to safely process difficult emotions underlying pain’, ‘description’: ‘Participants engage in intensive therapeutic approaches such as ISTDP to access and work through suppressed emotions like anger and rage. Despite fears and trust barriers, gradually confronting these feelings reveals their role in physical pain and supports emotional and physical healing.’, ‘code_slugs’: [‘emotion-focused-pain-therapy’, ‘therapy-engagement-barriers’, ‘emotions-source-physical-pain’]}, {‘name’: ‘gaining validation and hope from medical acceptance and evolving pain recovery treatments’, ‘description’: ‘Increasing recognition of emotion-focused therapy within medical communities provides participants with critical validation and optimism. Growing professional acceptance and scientific support enhance trust in therapies targeting emotional causes of chronic pain, positively influencing recovery experiences.’, ‘code_slugs’: [‘professional-acceptance-therapy’]}, {‘name’: ‘adapting mindset to accept therapy as an integral part of chronic illness recovery’, ‘description’: ‘Participants describe a challenging but vital mental shift from viewing therapy as coping to embracing it as essential for true recovery. This shift bridges perceived divides between mental and physical health, fostering commitment to holistic healing beyond symptom management.’, ‘code_slugs’: [‘mindset-shift-therapy-acceptance’]}, {‘name’: ‘living with chronic symptoms involves acceptance and developing tools to manage setbacks’, ‘description’: ‘Participants acknowledge that recovery is an ongoing journey requiring acceptance of fluctuating symptoms. They rely on coping strategies, empowering self-statements, and supportive encouragement to maintain progress, regain confidence, and face challenges without fear or frustration.’, ‘code_slugs’: [‘recovery-is-journey’, ‘mental-stamina-recovery’, ‘empowering-self-statements’, ‘supportive-encouragement’]}, {‘name’: ‘experiencing isolation and frustration from long COVID and desire for empathy and validation’, ‘description’: ‘Long COVID participants report persistent fatigue limiting activities, leading to isolation and emotional distress. A strong desire for empathetic recognition and validation from others underscores their need for acknowledgment of their struggles and supports to mitigate stigma and loneliness.’, ‘code_slugs’: [‘long-covid-frustration-isolation’, ‘desire-understanding-validation’]}, {‘name’: ‘yearning to regain physical energy and normal functioning to reclaim identity’, ‘description’: ‘Participants express deep longing to restore lost energy and perform daily activities without exhaustion. This desire is connected to coping with identity shifts caused by chronic illness, reflecting a struggle to accept new limitations and reclaim a sense of self.’, ‘code_slugs’: [‘regain-physical-energy’, ‘coping-identity-changes’]}, {‘name’: ‘struggling with medical uncertainty and frustration over normal test results despite symptoms’, ‘description’: ‘Participants experience doubt and confusion when extensive medical tests show normal results despite debilitating symptoms. This leads to questioning the nature of their illness and considering mental health explanations, highlighting challenges in diagnosis and validation.’, ‘code_slugs’: [‘frustration-medical-tests’, ‘energy-loss-fatigue’]}, {‘name’: ‘understanding chronic pain as a brain-embedded survival response requiring acceptance’, ‘description’: “Pain is perceived as a persistent neural memory embedded in the brain’s pain circuits. Participants find that fighting pain reinforces it, while acceptance and separation from pain facilitate creating new neural pathways, enabling life despite chronic symptoms driven by autonomic threat responses.”, ‘code_slugs’: [‘pain-memory-neuroplasticity’, ‘anger-fight-flight’, ‘letting-go-fighting-pain’, ‘threat-physiology-chronic-symptoms’, ‘physiology-over-consciousness’, ‘unconscious-brain-survival’]}, {‘name’: ‘breaking free from negative thought cycles to reduce pain and emotional distress’, ‘description’: ‘Participants describe battling negative repetitive thoughts that aggravate anxiety and symptoms. Learning to separate self-identity from these intrusive thoughts through behavioral and expressive therapies reduces distress and supports healing by calming physiological arousal.’, ‘code_slugs’: [‘separating-negative-thoughts’]}, {‘name’: ‘cultivating joy, safety, and health habits to counteract chronic stress and support healing’, ‘description’: ‘Joyful experiences, positive relationships, and lifestyle factors like sleep, diet, and exercise foster nervous system calm and create conditions conducive to healing. Participants emphasize balancing physiological safety and nurturance to overcome chronic illness and thrive despite past pain and stress.’, ‘code_slugs’: [‘nurturing-joy-healing’, ‘sleep-diet-exercise-nervous-system’]}, {‘name’: ‘discovering hope and new perspectives through transformational recovery literature’, ‘description’: “Key books such as Dr. John Sarno’s work resonate deeply with participants, offering explanation, hope, and practical recovery approaches. These writings introduce mind-body concepts that inspire therapeutic career paths and provide foundational knowledge supporting recovery.”, ‘code_slugs’: [‘book-key-pain-recovery’]}]}
Type: Transform
Results of a thematic analysis: ## CODES codenotes: Codes to keep for final CodeList: - Persistent fatigue and energy drain on standing - Overexertion leading to relapse and worsening symptoms - Relentless pushing through fatigue despite physical limits - Realization and acceptance of necessary lifestyle changes - Embracing brain retraining as a key to recovery - Learning to set boundaries to manage energy and avoid overcommitment - Difficulty with relaxation and understanding true rest - Frustration and occasional anger toward others’ misunderstanding of illness - Maintaining hope and positivity despite chronic illness challenges - Developing self-awareness to avoid overexertion and manage symptoms - Focusing on holistic recovery instead of individual symptoms - Desire for symptom comparison but finding it unhelpful - Using symptom management mainly for comfort rather than recovery - Need to tailor recovery plans individually to each person's lifestyle and journey - Frustration and disappointment from focusing on symptom-specific fixes - Setting emotional boundaries around discussing past symptoms - Walking miracle gratitude for life after chronic illness - Difficulty relating to healthy friends post illness - Frustration with delayed diagnosis and misdiagnosis - Self advocacy and research to access better healthcare - Discovery and treatment of genetic mitochondrial disease - Drastic lifestyle changes including diet and environment for recovery - Overcoming intense sugar addiction to support healing - Movement therapy as gentle rehabilitation rather than exercise - Psychological impact and personal growth from chronic illness experience - Fear and anxiety about pregnancy symptoms being illness relapse - Hope and positivity through seeing others recover from chronic illness - Self empowerment through knowledge acquisition and faith in recovery - Scary and confusing early illness experience - Feeling isolated due to illness - Rejection of depression diagnosis and emotional awareness - Hope from meditation and yoga practices - Desperation leads to trying various alternative therapies - Realization of suppressed anger and unresolved trauma - Mind-body connection and trauma understanding - Learning authentic self-expression and setting boundaries - Spiritual experience as part of healing journey - Ongoing self-care and regulation post recovery - Career shift driven by healing experience - Recognizing familial and ancestral trauma impact on health - Trauma leading to sudden health crisis and exhaustion - Fear and uncertainty following chronic fatigue syndrome diagnosis - Resentment towards restrictive diets imposed in treatment - Regaining personal agency and control in healing journey - Experiencing mental peace while symptoms persist - Adopting brain and nervous system explanation for ME/CFS symptoms - Cultivating self-compassion to manage symptoms and aid recovery - Role of personality traits like perfectionism in illness experience - Acknowledging and processing emotions as key to recovery - Finding validation and hope through empathetic connection - Energy loss and fatigue reducing daily activity - Frustration from inconclusive medical investigations - Initial skepticism towards brain retraining techniques - Importance of mental stamina for physical activity recovery - Valuing supportive and personal encouragement during recovery - Developing empowering self-statements to combat anxiety - Recognizing recovery as a journey, not a fixed state - Feeling frustrated and isolated due to long COVID limitations - Desire for understanding and validation from others - Need to regain physical energy and return to normal function - Search for effective treatment and cures for symptom relief - Coping with changes to identity and sense of self - Anger as fight or flight physiology driving chronic pain - Chronic pain as embedded memory in neuroplastic pain circuits - Unconscious brain drives survival responses and chronic symptoms - Letting go of fighting pain as crucial to healing process - Threat physiology underlies chronic mental and physical symptoms - Separating oneself from negative and repetitive thoughts - Nurturing joy as a vital part of healing journey - Importance of sleep diet and exercise for calming nervous system - Physiology's dominance over conscious brain in symptom experience - Using skepticism as a starting point to engage in healing - Book as key to chronic pain recovery approach - Emotion-focused therapy as core to pain recovery process - Barriers to engaging with emotion-focused therapy include fear and trust issues - Growing acceptance of emotion-focused therapy among medical professionals - Mindset shift required for accepting therapy as part of recovery - Understanding emotions as the source of physical pain codes: codes=[Code(slug='persistent-fatigue-energy', name='Persistent fatigue and energy drain on standing', description='Participant describes extreme exhaustion and complete energy drain when standing after lying down, causing prolonged bedbound state and lasting impact on daily functioning.', quotes=["'...the minute i stood up i just couldn't do anything i just drained of energy completely'", "'...always tired constantly tired'"]), Code(slug='overexertion-relapse-cycle', name='Overexertion leading to relapse and worsening symptoms', description='Participant explains the cycle of pushing beyond limits, subsequent virus contraction, and severe relapse, resulting in retirement and major activity limitations.', quotes=["'...walking like ten miles every day ... i picked up a couple of viruses ... can't get out of bed'", "'...had to retire at that stage ... kept pushing myself'"]), Code(slug='pushing-through-fatigue', name='Relentless pushing through fatigue despite physical limits', description='Despite exhaustion and inability to perform simple tasks, participant continually pushed themselves to walk and exercise daily, worsening energy depletion.', quotes=["'i wouldn't let myself not go ... i'd wake up at five o'clock ... just went walking'", "'then i couldn't do anything for myself ... had to lie down because no energy to cook'"]), Code(slug='acceptance-lifestyle-changes', name='Realization and acceptance of necessary lifestyle changes', description='Participant initially in denial later recognized the need for significant lifestyle changes to manage illness instead of hoping to return to previous activity levels.', quotes=["'...i am going to have to make life changes ... my life is going to have to change'", "'part of it was just ignorance be part of it'"]), Code(slug='brain-retraining-recovery', name='Embracing brain retraining as a key to recovery', description="Skepticism about brain retraining shifted to acceptance after learning it addresses protective responses and mental 'fight or flight' state, leading to program participation and positive results.", quotes=["'...when he explaining ... your body has switched down some of the genes ... fight too much ... made sense'", "'...contacted jason and went onto his program because it actually really made sense'"]), Code(slug='setting-boundaries-energy', name='Learning to set boundaries to manage energy and avoid overcommitment', description='Participant emphasizes importance of personal boundaries like letting calls go to voicemail to prevent energy drain and managing social demands by self-monitoring exhaustion.', quotes=["'if my phone rings i let it go to voicemail so i can deal with it when i want to'", "'learning boundaries the hardest for me was learning boundaries'"]), Code(slug='difficulty-relaxing-rest', name='Difficulty with relaxation and understanding true rest', description="Participant struggles with relaxation practices like meditation and needs to relearn the concept and practice of 'real rest' familiar to healthy individuals but hard for her to implement.", quotes=["'...i'm not good at relaxing ... people say do meditation ... i just struggled with it'", "'...now i make myself every day lay down and take a nap or do some meditation'"]), Code(slug='anger-misunderstanding-others', name='Frustration and occasional anger toward others’ misunderstanding of illness', description='Participant feels annoyance and flares when others minimize or misunderstand her illness or recovery, particularly those who never had the illness or pass unfair judgment, showing emotional toll of misunderstanding.', quotes=["'when people say silly things sometimes ... i can flare up'", "'...when somebody minimizes it you can think no'"]), Code(slug='hope-positivity-chronic-illness', name='Maintaining hope and positivity despite chronic illness challenges', description='Participant’s positive and obstinate personality is key to refusing acceptance of permanent disability and sustaining belief in recovery and improvement despite long-term severe illness.', quotes=["'...i'm just a very positive person ... also obstinate'", "'never ever felt ... i was almost like in denial'"]), Code(slug='self-awareness-overexertion', name='Developing self-awareness to avoid overexertion and manage symptoms', description='Participant stresses importance of listening to body, recognizing triggers, and adjusting activities timely to prevent relapse and maintain health improvements.', quotes=["'...i've learnt to listen to myself listen to my body ... work out what my triggers are'", "'i can stop myself before i actually get to the stage where i'm really pushing boundaries'"]), Code(slug='holistic-recovery-focus', name='Focusing on holistic recovery instead of individual symptoms', description='Participants emphasize prioritizing overall body support and holistic healing in managing ME/CFS rather than treating isolated symptoms, which was overwhelming and ineffective, whereas holistic approach contributed to gradual recovery.', quotes=["'...recovery ended up being not about focusing on symptoms but on supporting my body as a whole...'", "'...as i slowly improved overall my symptoms slowly decreased...'"]), Code(slug='symptom-comparison-limit', name='Desire for symptom comparison but finding it unhelpful', description='Participants want to compare symptoms for reassurance but find it unhelpful or misleading due to wide symptom variation among individuals, making direct comparison counterproductive.', quotes=["'...people want to compare their symptoms against mine... to see if we're the same...'", "'...don't get too caught up on comparing symptoms...'"]), Code(slug='symptom-management-palliation', name='Using symptom management mainly for comfort rather than recovery', description='Symptom management is described as largely palliative to ease discomfort, with treatments alleviating suffering temporarily but not addressing underlying illness, which needs broader healing strategies.', quotes=["'...symptom management that i did was more palliative not about recovery...'", "'...if i had pain i might take painkillers or see doctor for sedatives...'"]), Code(slug='personalized-recovery-plans', name="Need to tailor recovery plans individually to person's lifestyle and journey", description="Participants highlight importance of personalized recovery plans adapted to individual's unique symptoms, lifestyle and disease experience, as pacing and treatments vary between individuals.", quotes=["'...somebody's recovery plan ... needs to be tailored...'", "'...pacing has to be tailored individually because their life is so different...'"]), Code(slug='frustration-symptom-fix', name='Frustration and disappointment from focusing on symptom-specific fixes', description='Participants report desperation and disillusionment from searching for symptom fixes, spending extensive time and money on treatments without holistic healing, leading to emotional exhaustion and need for alternative strategies.', quotes=["'...spent thousands of hours googling symptoms...', '...almost poisoning myself by buying organic elderberries...'", "'...needed a more comprehensive strategy rather than symptom by symptom fixes...'"]), Code(slug='emotional-boundaries-symptoms', name='Setting emotional boundaries around discussing past symptoms', description='Participants set limits on discussing past symptoms and one-on-one symptom troubleshooting to avoid trauma and overwhelm, preserving well-being while sharing recovery stories positively.', quotes=["'...have boundaries ... not talking about old symptoms ...'", "'...writing my story took forever because it's traumatizing going back...'"]), Code(slug='walking-miracle-gratitude', name='Walking miracle gratitude for life after chronic illness', description='Participant expresses deep appreciation for recovering to a life once only dreamed of, enjoying life with childlike wonder and daily gratitude despite occasional setbacks.', quotes=["'...i have to catch myself and be like you are a walking miracle like this is incredible'", "'It's like being like when you watch a six year old wandering...'"]), Code(slug='difficulty-relating-healthy', name='Difficulty relating to healthy friends post illness', description='Participant struggles maintaining friendships with healthy friends who complain or take health for granted, experiencing detachment and missing activities like working out.', quotes=["'...friends who've never been through it ... complain about their lives ... detachment'", "'...i really struggle with people who seem physically able but choose not to...'"]), Code(slug='diagnosis-delay-misdiagnosis', name='Frustration with delayed diagnosis and misdiagnosis', description="Participant recounts initial fibromyalgia diagnosis ignoring fatigue, leading to delayed appropriate diagnosis and frustration with medical system's lack of understanding and care.", quotes=["'...diagnosed with fibromyalgia ignoring fatigue... no treatment for many years...'", "'It took a while before chronic fatigue diagnosis...'"]), Code(slug='self-advocacy-healthcare', name='Self advocacy and research to access better healthcare', description='Participant actively researched and managed health, connecting with knowledgeable providers who identified underlying infections, aiding diagnosis and treatment.', quotes=["'...researching doctors as much as i could ... moved to get better care...'", "'...linked with doctors testing underlying infections...'"]), Code(slug='genetic-mitochondrial-treatment', name='Discovery and treatment of genetic mitochondrial disease', description='Diagnosis of mitochondrial DNA depletion syndrome explained infections and fatigue; treatment focused on mitochondrial support helped regain strength and combat infections, marking recovery progress.', quotes=["'...mitochondrial disease called mitochondrial dna depletion syndrome...'", "'...put on cocktail to boost mitochondria and fight infections...'"]), Code(slug='drastic-lifestyle-changes', name='Drastic lifestyle changes including diet and environment for recovery', description='Significant lifestyle changes like elimination diet, gradual movement rehab, and removing toxins were key to healing, with dietary modifications reducing inflammation and aiding recovery.', quotes=["'...dramatically change diet using food as medicine...'", "'...removed toxic ingredients and used water filtration...'"]), Code(slug='overcoming-sugar-addiction', name='Overcoming intense sugar addiction to support healing', description='Participant overcame physical sugar addiction disrupting health and sleep through gut healing and probiotics, resulting in diminished cravings and healthier eating habits.', quotes=["'Sugar was a massive one ... clearly had physical addiction...'", "'...up in middle of night every night and eat sugar'"]), Code(slug='movement-therapy-gentle-rehab', name='Movement therapy as gentle rehabilitation rather than exercise', description='Participant emphasizes very gradual, gentle movement for rehabilitation rather than typical exercise, balancing activity with rest to avoid relapse.', quotes=["'...gradually increase ability to move ... one to two minutes a day initially...'", "'...couldn't rest my way out of this i couldn't just lay in bed...'"]), Code(slug='psychological-growth-illness', name='Psychological impact and personal growth from chronic illness experience', description='Participant reflects on how illness changed identity, values, spirituality, fostering humility, acceptance, spiritual growth, gratitude and deeper appreciation for life and relationships.', quotes=["'It humbled me ... changed me ... i wouldn't say i had spirituality before'", "'...illness catapults our growth and puts us in a better direction'"]), Code(slug='pregnancy-anxiety-relapse', name='Fear and anxiety about pregnancy symptoms being illness relapse', description='Participant describes anxiety and uncertainty distinguishing pregnancy symptoms from illness relapse, learning self-compassion and cautious optimism about health journey.', quotes=["'I keep reminding myself these are normal symptoms... fatigue or relapse?'", "'...normal to have headaches when pregnant, normal to feel tired...'"]), Code(slug='hope-positivity-others-recover', name='Hope and positivity through seeing others recover from chronic illness', description='Participant gains essential hope and motivation by seeing recovery stories, highlighting importance of community and shared experience to sustain perseverance through chronic illness.', quotes=["'...so nice to see many people getting past these things'", "'...people start reaching out to me, i recovered as well...'"]), Code(slug='self-empowerment-knowledge-faith', name='Self empowerment through knowledge acquisition and faith in recovery', description='Participant credits self-education on illness combined with spiritual trust and faith as key to recovery, emphasizing trust in healing process and rejection of limiting prognoses.', quotes=["'...had to go through years of research and learning'", "'It was like getting a bachelor’s degree in chronic illness'"]), Code(slug='scary-confusing-early-illness', name='Scary and confusing early illness experience', description='Participant describes onset of chronic fatigue as frightening and confusing, with overwhelming health decline requiring university leave and grieving process.', quotes=["'...felt a bit fluy felt a bit strange felt a bit scared because it felt really weird'", "'...didn't know what was going on ... really scary time'"]), Code(slug='feeling-isolated-illness', name='Feeling isolated due to illness', description='Participant felt lonely after returning home separated from university friends, relying primarily on family for support during tough times.', quotes=["'...all my friends from home had gone to university ... didn't really have anyone other than family'", "'...it was a very tough time'"]), Code(slug='reject-depression-diagnosis', name='Rejection of depression diagnosis and emotional awareness', description='Participant rejected doctor depression diagnosis, believing deeper physical illness despite emotional challenges and depression related to illness.', quotes=["'one of the first doctors said she just thought i was depressed'", "'i knew it wasn't just depression i knew there was emotion about feeling unwell'"]), Code(slug='hope-meditation-yoga', name='Hope from meditation and yoga practices', description='Early meditation, yoga and breath work brought some relief and hope though benefits were sometimes temporary and inconsistent during long recovery.', quotes=["'...perhaps meditation and yoga can help me heal'", "'...felt different after doing alternate nostril breathing'"]), Code(slug='desperation-trying-therapies', name='Desperation leads to trying various alternative therapies', description='Participant tried multiple alternative therapies such as acupuncture, reiki, nutrition, colon hydrotherapy out of desperation, with limited or mixed success.', quotes=["'...went for reiki and this and that'", "'...flew to america to work with healer'"]), Code(slug='suppressed-anger-trauma', name='Realization of suppressed anger and unresolved trauma', description='Participant recognized suppressed anger and trauma affecting recovery, identifying emotional blocks and unresolved feelings contributing to physical symptoms.', quotes=["'...had suppressed anger and unresolved trauma in my system'", "'...avoiding conflict at all costs'"]), Code(slug='mindbody-trauma-understanding', name='Mind-body connection and trauma understanding', description='Participant found healing by exploring mind-body link, viewing symptoms as trauma manifestations such as freeze response, and identifying emotional triggers.', quotes=["'...looking at symptoms ... emotion underlying this symptom'", "'...impact of trauma on my system manifesting physically like a freeze response'"]), Code(slug='authentic-self-expression', name='Learning authentic self-expression and setting boundaries', description='Recovery involved learning to express authentic emotions and needs without fear, employing communication skills to balance self-care and relationships.', quotes=["'learning to be more myself more authentic'", "'learning non violent communication...'"]), Code(slug='spiritual-experience-healing', name='Spiritual experience as part of healing journey', description='Spiritual awakening, meditation, and mystical experiences were deep and sometimes destabilizing parts of recovery, requiring balance of spiritual insight and daily functioning.', quotes=["'...spiritual awakening'", "'...felt like connecting with the whole universe'"]), Code(slug='ongoing-self-care-post-recovery', name='Ongoing self-care and regulation post recovery', description='Participant manages emotional and trauma symptoms post-recovery with self-regulation strategies including nature exposure and therapeutic work to maintain well-being.', quotes=["'...periodically trauma type symptoms'", "'...go do work with a practitioner or spend night time in nature'"]), Code(slug='career-shift-healing', name='Career shift driven by healing experience', description='Healing journey influenced career towards coaching and therapeutic work, integrating personal recovery insights professionally while continuing learning and practices.', quotes=["'...lots of therapeutic and coaching trainings'", "'...nearly twenty years working in this field'"]), Code(slug='familial-ancestral-trauma', name='Recognizing familial and ancestral trauma impact on health', description='Participant recognizes ancestral and family trauma influencing illness patterns and wider systemic generational factors contributing to chronic fatigue symptoms.', quotes=["'...a lot of my trauma wasn't personal but was ancestral ... from family line'", "'...illness in one person might be a wider family system issue'"]), Code(slug='trauma-sudden-crisis', name='Trauma leading to sudden health crisis and exhaustion', description='Sexual assault and subsequent infection triggered severe exhaustion and ME/CFS symptoms like insomnia, brain fog and digestive issues lasting years.', quotes=["'...sexually assaulted and that led to urinary tract infection ... system blacked out ... flu twenty four seven'", "'...digestive issues ... hot flashes even though young'"]), Code(slug='fear-uncertainty-diagnosis', name='Fear and uncertainty following chronic fatigue syndrome diagnosis', description='Diagnosis brought relief and devastating fear likened to death or life sentence with no cure, causing significant emotional distress.', quotes=["'...so scared ... it was such a death sentence but also a life sentence'", "'...relieved to have diagnosis ... no cure'"]), Code(slug='resentment-diets-treatment', name='Resentment towards restrictive diets imposed in treatment', description='Participant resented elimination diets imposed without collaboration, feeling miserable and disempowered rather than active in the healing process.', quotes=["'...totally miserable ... taking away anything you enjoy eating'", "'...felt it was being done to me ... perpetuating trauma'"]), Code(slug='regaining-agency-healing', name='Regaining personal agency and control in healing journey', description='Participant emphasizes reclaiming power and collaborating actively in healing process to avoid resentment and improve progress.', quotes=["'...have to regain my agency and collaboration in healing'", "'...started realizing with diet ... otherwise i was resenting it'"]), Code(slug='mental-peace-symptoms', name='Experiencing mental peace while symptoms persist', description='Despite severe symptoms, participant achieved mental peace and nonresistance through meditation and spiritual connection, aiding emotional adaptation and recovery progress.', quotes=["'...internal state of nonresistance or peace ... it just kind of happened'", "'...watching symptoms but felt peace'"]), Code(slug='brain-nervous-sys-fatigue', name='Adopting brain and nervous system explanation for ME/CFS symptoms', description='Learning symptoms result from brain and nervous system stress response shifted participant from helplessness to empowerment to calm nervous system and improve symptoms.', quotes=["'...brain and nervous system processing stress ... not sick but stressed'", "'...brain generates pain fatigue because it senses danger'"]), Code(slug='self-compassion-recovery', name='Cultivating self-compassion to manage symptoms and aid recovery', description='Self-compassion reduces self-criticism that triggers stress and perpetuates symptoms, enabling emotional regulation and physical improvement.', quotes=["'...self criticism activates danger alarm in brain ... feeds symptoms'", "'...talk to myself in a compassionate way ... what do you want right now'"]), Code(slug='personality-traits-illness', name='Role of personality traits like perfectionism in illness experience', description='Traits like perfectionism, people-pleasing, conscientiousness and emotional suppression contribute to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.', quotes=["'perfectionist check, people pleasers check ... really conscientious'", "'holding the emotions ... like a pressure cooker'"]), Code(slug='emotional-processing-key', name='Acknowledging and processing emotions as key to recovery', description='Therapeutic practices like journaling and psychotherapy help express anger, grief and trauma, releasing emotional pressure contributing to nervous system hypervigilance and symptom worsening.', quotes=["'...some psychotherapy was helpful ... talk through griefs'", "'...journaling your anger ... bottled up anger can be very harmful'"]), Code(slug='validation-hope-connection', name='Finding validation and hope through empathetic connection', description='Talking with someone who understood illness and brain-based mechanisms offered crucial validation and hope, triggering energy and belief in recovery.', quotes=["'...spent three hours on phone ... finally heard the truth ... gave me hope'", "'...got up and ran around the block like never before'"]), Code(slug='energy-loss-fatigue', name='Energy loss and fatigue reducing daily activity', description='Participant experienced drop in energy and motivation, leading to extended rest periods and physical symptoms reflecting debilitating impact of CFS/long COVID.', quotes=["'...started to get really tired ... no motivation to do activities...'", "'...laying in bed would get canker sores ... not feeling the best'"]), Code(slug='frustration-medical-tests', name='Frustration from inconclusive medical investigations', description='Participant felt uncertain and doubtful when tests showed normal despite symptoms, leading to exploration of mental health explanations and self-doubt.', quotes=["'...multiple doctors said everything was perfectly fine ...'", "'...thought maybe something mentally causing this'"]), Code(slug='skepticism-brain-retraining', name='Initial skepticism towards brain retraining techniques', description='Participant doubted brain retraining programs at first, but upon commitment found them effective for symptom management and anxiety reduction.', quotes=["'...program has hypnosis type of effect ... initially skeptical'", "'...committed and made a difference'"]), Code(slug='mental-stamina-recovery', name='Importance of mental stamina for physical activity recovery', description='Mental stamina and positive mindset were crucial for progressing from basic function to running a 10k and training for a marathon, highlighting mental role in physical recovery.', quotes=["'...didn't have mental stamina to do that before...'", "'...positive affirmations and growth mindset...'"]), Code(slug='supportive-encouragement', name='Valuing supportive and personal encouragement during recovery', description='Encouragement and belief from recovery coach Jason boosted motivation and aided healing, illustrating importance of personal connection in recovery journey.', quotes=["'...text messages saying i climbed mountain ... i know you can do it'", "'...great having someone who believes in you that much...'"]), Code(slug='empowering-self-statements', name='Developing empowering self-statements to combat anxiety', description='Participant learned to replace disempowering anxiety statements with growth-oriented affirmations fostering positive and hopeful mindset for emotional resilience.', quotes=["'...saying i am anxious is disempowering ... say i am on my way to getting better'", "'...it's a journey rather than a stuck state...'"]), Code(slug='recovery-is-journey', name='Recognizing recovery as a journey, not a fixed state', description='Recovery involves ongoing management and coping rather than symptom absence, using tools to handle fluctuations and maintain progress without fear.', quotes=["'...have tools to fix that ... life is stressful ... i can refocus'", "'...journey ... can't keep comparing yourself...'"]), Code(slug='long-covid-frustration-isolation', name='Feeling frustrated and isolated due to long COVID limitations', description='Participants express frustration with ongoing symptoms and limitations from long COVID, feeling isolated and disconnected from prior healthy life and social connections.', quotes=["'...feel drained all the time ... used to be active now barely manage walk...'", "'...people don’t see struggle you go through ... makes you feel alone...'"]), Code(slug='desire-understanding-validation', name='Desire for understanding and validation from others', description='Participants strongly desire acknowledgement and belief in their long COVID and ME/CFS experience to reduce stigma and obtain emotional support.', quotes=["'...sometimes it feels like people think it’s in your head...'", "'...validation would mean the world ... proves not making this up...'"]), Code(slug='regain-physical-energy', name='Need to regain physical energy and return to normal function', description='Participants express longing to regain physical energy and resume routine activities without debilitating fatigue, describing simple tasks as exhausting.', quotes=["'...if i could get some energy back ... feel like myself'", "'...fatigue so overwhelming even making meal feels like climbing mountain...'"]), Code(slug='search-effective-treatment', name='Search for effective treatment and cures for symptom relief', description='Participants discuss ongoing search for treatments that relieve symptoms or bring recovery, facing frustration with lack of clear options and trial and error approaches.', quotes=["'...tried so many treatments but nothing works...'", "'...keep hoping for a cure to move on with life...'"]), Code(slug='coping-identity-changes', name='Coping with changes to identity and sense of self', description='Participants mourn their previous healthy self and struggle with new limitations and changed roles, affecting identity and self-concept.', quotes=["'...don’t recognize person i am now compared to before...'", "'...hard to accept not doing what used to do...'"]), Code(slug='anger-fight-flight', name='Anger as fight or flight physiology driving chronic pain', description='Anger is a survival physiological response generated by fight or flight sensations causing chronic pain deeply wired in nervous system, uncontrollable by conscious mind.', quotes=["'...biggest factor keeping people in pain is anger ... fight or flight sensation'", "'anger and anxiety are physiological survival responses ... no control'"]), Code(slug='pain-memory-neuroplasticity', name='Chronic pain as embedded memory in neuroplastic pain circuits', description='Chronic pain seen as permanent brain memory in pain circuits that cannot be erased; fighting pain reinforces it; acceptance allows separation and symptom reduction.', quotes=["'...pain circuits absolutely permanent like phantom limb pain'", "'...fighting pain reinforces it; you learn to separate yourself from pain'"]), Code(slug='unconscious-brain-survival', name='Unconscious brain drives survival responses and chronic symptoms', description='Unconscious brain processes vast information to keep alive, chronic symptoms arise from physiological threat states beyond conscious control, explaining difficulty managing illness consciously.', quotes=["'...unconscious brain keeps you alive ... conscious brain only small part'", "'...can't control it like dragging with handbrakes'"]), Code(slug='letting-go-fighting-pain', name='Letting go of fighting pain as crucial to healing process', description='Healing requires shifting from fighting pain to letting go and acceptance, reducing reinforcement of pain circuits and creating new neural pathways supporting life on own terms.', quotes=["'...hardest part is people can't help but try to fix themselves'", "'...learn to separate yourself from pain and get on with life'"]), Code(slug='threat-physiology-chronic-symptoms', name='Threat physiology underlies chronic mental and physical symptoms', description='Chronic symptoms including pain, anxiety and depression stem from sustained threat physiology causing nervous system hyperactivity and inflammation, requiring calming physiology rather than only treating symptoms.', quotes=["'...every chronic disease related to chronic stress'", "'...anxiety depression bipolar ocd schizophrenia are metabolic inflammatory disorders'"]), Code(slug='separating-negative-thoughts', name='Separating oneself from negative and repetitive thoughts', description='Separating identity from negative intrusive thoughts using therapies reduces physiological arousal caused by thoughts that fuel anxiety and pain.', quotes=["'...separate from the thoughts that's where behavior therapy comes into play'", "'...direct relationship between thoughts and suicide attempts'"]), Code(slug='nurturing-joy-healing', name='Nurturing joy as a vital part of healing journey', description='Joy through positive experiences and relationships supports healing by building new neural pathways, countering threat physiology and enabling flourishing beyond pain.', quotes=["'...nurture joy if you’re fighting stress not possible'", "'...good food good wine good friends promote healing'"]), Code(slug='sleep-diet-exercise-nervous-system', name='Importance of sleep diet and exercise for calming nervous system', description='Sleep, diet and exercise foundational for calming nervous system, regulating physiology, reducing inflammation and supporting healing and regeneration.', quotes=["'...address sleep is number one...'", "'...lack of sleep causes chronic back pain not the way around'"]), Code(slug='physiology-over-consciousness', name="Physiology's dominance over conscious brain in symptom experience", description='Physiological nervous system responses overpower conscious brain’s control of symptoms; fight or flight inhibits cognitive function, making conscious efforts insufficient alone.', quotes=["'...half a million times stronger than conscious brain'", "'...highest thinking brain neocortex doesn’t work in fight or flight'"]), Code(slug='skepticism-starting-point-healing', name='Using skepticism as a starting point to engage in healing', description='Skepticism is a valid initial stance for learning new healing approaches, encouraging connection to experience and curiosity rather than blind belief to gradually shift physiology and symptoms.', quotes=["'...don't believe me ... connect to skepticism ... starting point'", "'...start doing the work now letting your brain change'"]), Code(slug='book-key-pain-recovery', name='Book as key to chronic pain recovery approach', description='A specific book was pivotal for understanding and recovery from chronic pain, resonating with symptoms and personality, influencing therapeutic career choice.', quotes=["'...book by john sono ... back pain gone ... health problems went away'", "'...personality characteristics true for me and most clients'"]), Code(slug='emotion-focused-pain-therapy', name='Emotion-focused therapy as core to pain recovery process', description='Intensive Short-Term Dynamic Psychotherapy (ISTDP) is central for chronic pain recovery, focusing on accessing and processing suppressed emotions like anger and rage causing physical pain.', quotes=["'...core intervention is emotion focused approach ... all emotions healthy'", "'...therapy helps notice bodily tension often anxiety about anger or rage'"]), Code(slug='therapy-engagement-barriers', name='Barriers to engaging with emotion-focused therapy include fear and trust issues', description='Patients face fears and defenses that hinder engagement with emotion-focused therapy; require gradual emotional exposure and support to lower defenses and benefit from treatment.', quotes=["'...some folks work quickly others more complicated with challenges'", "'...ISTDP difficult but supportive ... gradual emotional threshold building'"]), Code(slug='professional-acceptance-therapy', name='Growing acceptance of emotion-focused therapy among medical professionals', description='Medical community increasingly recognizes and integrates emotion-focused therapy for chronic pain, with training, referrals, and scientific support increasing over time.', quotes=["'...most folks come because they accept this approach'", "'...training doctors in local hospital ... growing recognition'"]), Code(slug='mindset-shift-therapy-acceptance', name='Mindset shift required for accepting therapy as part of recovery', description='Acceptance of therapy requires paradigm shift from seeing mental health as separate to integrating physical and emotional health, moving from coping to true recovery path.', quotes=["'...mental health and physical health often thought separate'", "'...therapy seen as coping not to get better initially'"]), Code(slug='emotions-source-physical-pain', name='Understanding emotions as the source of physical pain', description='Emotions, especially unacceptable or dangerous ones, are converted into physical symptoms such as chronic pain; MRI research supports this process, validating psychological origins and need for emotional therapy.', quotes=["'...strategies to ward off dangerous emotions turned into physical pain'", "'...chronic pain brains light up amygdala responsible for anger and rage'"])] ## THEMES themes: themes=[Theme(name='experiencing relentless fatigue and energy crashes leading to debilitating daily function loss', description='Participants describe severe exhaustion triggered by minimal physical activity, such as standing, causing complete energy depletion that leads to prolonged bed rest and inability to perform basic tasks. This relentless fatigue often worsens through overexertion, causing relapses that significantly disrupt their day-to-day functioning and independence.', code_slugs=['persistent-fatigue-energy', 'overexertion-relapse-cycle', 'pushing-through-fatigue']), Theme(name='struggling with chronic illness limits while maintaining hope and adjusting lifestyle', description='Participants experience tension between initially denying their condition and accepting the need for significant lifestyle changes. They emphasize maintaining positive, hopeful mindsets and learning to set personal boundaries to manage energy, avoid overcommitment, and prevent relapse while gradually adapting to the chronic illness realities.', code_slugs=['acceptance-lifestyle-changes', 'hope-positivity-chronic-illness', 'self-awareness-overexertion', 'setting-boundaries-energy']), Theme(name='embracing brain retraining and nervous system calming for symptom control and recovery', description='Skepticism shifts to trust in brain retraining programs that address fight or flight responses embedded in the nervous system, enabling participants to gain control, reduce anxiety, and observe improvements. These approaches are embraced as fundamental parts of recovery, complementing emotional regulation and nervous system calming strategies.', code_slugs=['brain-retraining-recovery', 'brain-nervous-sys-fatigue', 'skepticism-brain-retraining', 'skepticism-starting-point-healing']), Theme(name='difficulties with genuine rest and relaxation practices essential for recovery', description='Participants struggle to implement real rest and authentic relaxation, such as meditation or naps, finding it challenging to override ingrained habits and mental resistance. Learning to genuinely relax is necessary and transformative but remains a persistent challenge in managing ongoing fatigue and symptoms.', code_slugs=['difficulty-relaxing-rest']), Theme(name='emotional struggle from social misunderstandings requiring boundaries to protect well-being', description='Frustrations arise from others’ misunderstanding and minimizing of their illness, often triggering anger and emotional distress. Participants describe the necessity of setting emotional boundaries around discussing symptoms and managing social interactions to protect mental health and maintain recovery progress.', code_slugs=['anger-misunderstanding-others', 'emotional-boundaries-symptoms']), Theme(name='valuing holistic recovery over symptom-specific treatments to foster comprehensive healing', description='Participants highlight that focusing exclusively on symptom management offers only temporary relief. Embracing a holistic approach supporting the entire body leads to more meaningful recovery. Symptom-specific fixes are often frustrating and disillusioning, emphasizing the need for integrated, personalized recovery strategies.', code_slugs=['holistic-recovery-focus', 'symptom-management-palliation', 'frustration-symptom-fix']), Theme(name='recognizing the need for personalized recovery plans tailored to unique illness journeys', description='Recovery must be individually customized considering unique symptoms, lifestyles, and wellness paths. Participants stress that pacing, treatments, and strategies must be flexible and personally relevant to empower their healing journey effectively, avoiding generic or one-size-fits-all approaches.', code_slugs=['personalized-recovery-plans']), Theme(name='deep gratitude for renewed life and profound relationship changes after illness recovery', description='Experiencing recovery, participants express overwhelming gratitude and awe, describing feelings like a “walking miracle.” They reflect joy and appreciation for daily life and relationships while acknowledging challenges in reconnecting with healthy peers and adjusting social dynamics post-illness.', code_slugs=['walking-miracle-gratitude', 'difficulty-relating-healthy']), Theme(name='challenge and resilience through medical misdiagnosis prompting strong self-advocacy', description='Frustration from delayed or incorrect diagnoses leads participants to take active roles in their healthcare by researching providers, seeking knowledgeable specialists, and discovering underlying conditions. This self-advocacy is crucial to accessing effective treatments and regaining control over their health.', code_slugs=['diagnosis-delay-misdiagnosis', 'self-advocacy-healthcare', 'genetic-mitochondrial-treatment']), Theme(name='undertaking drastic lifestyle changes including diet, movement, and toxin avoidance for healing', description='Participants commit to significant life alterations, such as elimination diets, gentle movement therapy, and reducing environmental toxins. Overcoming challenges like sugar addiction, they carefully pace their rehabilitation to support inflammation reduction and sustainable recovery.', code_slugs=['drastic-lifestyle-changes', 'overcoming-sugar-addiction', 'movement-therapy-gentle-rehab']), Theme(name='transforming through psychological growth, spiritual awakening, and enhanced self-expression', description='The chronic illness journey fosters deep psychological and spiritual transformation. Participants gain humility, acceptance, and a renewed sense of self, employing authentic communication and boundary-setting skills. Spiritual experiences sometimes challenge daily life but contribute significantly to healing and personal development.', code_slugs=['psychological-growth-illness', 'spiritual-experience-healing', 'authentic-self-expression', 'self-empowerment-knowledge-faith']), Theme(name='managing anxiety related to pregnancy symptoms with self-compassion and cautious optimism', description='Participants face fear and anxious uncertainty interpreting pregnancy symptoms through the lens of past illness. They learn to differentiate normal pregnancy experiences from relapse signs, cultivating self-kindness and cautious hope to navigate this emotional terrain safely.', code_slugs=['pregnancy-anxiety-relapse']), Theme(name="inspired hope and community support from witnessing others' recoveries", description='Seeing others improve and connect with supportive communities provides vital hope to participants, reducing loneliness and sustaining motivation. Shared experiences validate their journey, fostering perseverance and faith in eventual improvements despite chronic challenges.', code_slugs=['hope-positivity-others-recover', 'validation-hope-connection']), Theme(name='early illness shock and isolation amidst misunderstood symptoms and lack of diagnosis', description='Participants recount a frightening onset of chronic fatigue characterized by confusion, isolation from friends and usual environments, and emotional distress. Misdiagnoses and being dismissed as depressed amplify feelings of misunderstanding and loneliness during critical early stages.', code_slugs=['scary-confusing-early-illness', 'feeling-isolated-illness', 'reject-depression-diagnosis']), Theme(name='desperation fuels trial of varied alternative therapies seeking relief and recovery', description='Driven by urgency and hope, participants experiment with multiple complementary therapies including acupuncture, reiki, nutrition, and colon hydrotherapy. Though outcomes vary, this exploration reflects a willingness to try diverse methods amid limited conventional options.', code_slugs=['desperation-trying-therapies']), Theme(name='unlocking healing by addressing suppressed anger, trauma, and mind-body connections', description='Recognition and processing of unresolved anger, trauma, and stress patterns emerge as central to recovery. Participants link physical symptoms to emotional blocks and trauma manifestations, employing mind-body frameworks to facilitate breakthroughs and alleviate symptom severity.', code_slugs=['suppressed-anger-trauma', 'mindbody-trauma-understanding']), Theme(name='engaging in emotion-focused therapy to safely process difficult emotions underlying pain', description='Participants engage in intensive therapeutic approaches such as ISTDP to access and work through suppressed emotions like anger and rage. Despite fears and trust barriers, gradually confronting these feelings reveals their role in physical pain and supports emotional and physical healing.', code_slugs=['emotion-focused-pain-therapy', 'therapy-engagement-barriers', 'emotions-source-physical-pain']), Theme(name='gaining validation and hope from medical acceptance and evolving pain recovery treatments', description='Increasing recognition of emotion-focused therapy within medical communities provides participants with critical validation and optimism. Growing professional acceptance and scientific support enhance trust in therapies targeting emotional causes of chronic pain, positively influencing recovery experiences.', code_slugs=['professional-acceptance-therapy']), Theme(name='adapting mindset to accept therapy as an integral part of chronic illness recovery', description='Participants describe a challenging but vital mental shift from viewing therapy as coping to embracing it as essential for true recovery. This shift bridges perceived divides between mental and physical health, fostering commitment to holistic healing beyond symptom management.', code_slugs=['mindset-shift-therapy-acceptance']), Theme(name='living with chronic symptoms involves acceptance and developing tools to manage setbacks', description='Participants acknowledge that recovery is an ongoing journey requiring acceptance of fluctuating symptoms. They rely on coping strategies, empowering self-statements, and supportive encouragement to maintain progress, regain confidence, and face challenges without fear or frustration.', code_slugs=['recovery-is-journey', 'mental-stamina-recovery', 'empowering-self-statements', 'supportive-encouragement']), Theme(name='experiencing isolation and frustration from long COVID and desire for empathy and validation', description='Long COVID participants report persistent fatigue limiting activities, leading to isolation and emotional distress. A strong desire for empathetic recognition and validation from others underscores their need for acknowledgment of their struggles and supports to mitigate stigma and loneliness.', code_slugs=['long-covid-frustration-isolation', 'desire-understanding-validation']), Theme(name='yearning to regain physical energy and normal functioning to reclaim identity', description='Participants express deep longing to restore lost energy and perform daily activities without exhaustion. This desire is connected to coping with identity shifts caused by chronic illness, reflecting a struggle to accept new limitations and reclaim a sense of self.', code_slugs=['regain-physical-energy', 'coping-identity-changes']), Theme(name='struggling with medical uncertainty and frustration over normal test results despite symptoms', description='Participants experience doubt and confusion when extensive medical tests show normal results despite debilitating symptoms. This leads to questioning the nature of their illness and considering mental health explanations, highlighting challenges in diagnosis and validation.', code_slugs=['frustration-medical-tests', 'energy-loss-fatigue']), Theme(name='understanding chronic pain as a brain-embedded survival response requiring acceptance', description="Pain is perceived as a persistent neural memory embedded in the brain's pain circuits. Participants find that fighting pain reinforces it, while acceptance and separation from pain facilitate creating new neural pathways, enabling life despite chronic symptoms driven by autonomic threat responses.", code_slugs=['pain-memory-neuroplasticity', 'anger-fight-flight', 'letting-go-fighting-pain', 'threat-physiology-chronic-symptoms', 'physiology-over-consciousness', 'unconscious-brain-survival']), Theme(name='breaking free from negative thought cycles to reduce pain and emotional distress', description='Participants describe battling negative repetitive thoughts that aggravate anxiety and symptoms. Learning to separate self-identity from these intrusive thoughts through behavioral and expressive therapies reduces distress and supports healing by calming physiological arousal.', code_slugs=['separating-negative-thoughts']), Theme(name='cultivating joy, safety, and health habits to counteract chronic stress and support healing', description='Joyful experiences, positive relationships, and lifestyle factors like sleep, diet, and exercise foster nervous system calm and create conditions conducive to healing. Participants emphasize balancing physiological safety and nurturance to overcome chronic illness and thrive despite past pain and stress.', code_slugs=['nurturing-joy-healing', 'sleep-diet-exercise-nervous-system']), Theme(name='discovering hope and new perspectives through transformational recovery literature', description="Key books such as Dr. John Sarno's work resonate deeply with participants, offering explanation, hope, and practical recovery approaches. These writings introduce mind-body concepts that inspire therapeutic career paths and provide foundational knowledge supporting recovery.", code_slugs=['book-key-pain-recovery'])] ## TASK Write this up as a standard qualitative report, ready copying and pasting into the results section of an academic journal. Don't include titles, intro, citations or extended discussion — this is just the result of the analysis. Be brief - about 1 paragraph per theme. Make sure to include quotes for each theme which explain and bring the theme to life for readers. Do not edit quotes. No preamble - just report. Use simple markdown. Make the theme names bold face. Always use the tools/JSON response. ```json
Experiencing relentless fatigue and energy crashes leading to debilitating daily function loss: Participants describe profound exhaustion triggered by minimal activity such as standing, resulting in complete energy depletion necessitating prolonged bed rest and inability to perform basic tasks. This fatigue often worsens through cycles of overexertion and relapse, severely disrupting daily life and independence. For instance, one shared, “…the minute i stood up i just couldn’t do anything i just drained of energy completely,” and another noted, “…walking like ten miles every day … i picked up a couple of viruses … can’t get out of bed.”
Struggling with chronic illness limits while maintaining hope and adjusting lifestyle: Participants confront the challenge of accepting the chronic nature of their illness while preserving hope and adapting their lifestyles. They emphasize learning to set personal boundaries to conserve energy and prevent relapse, underscoring the importance of positivity and self-awareness. A participant expressed, “…i am going to have to make life changes … my life is going to have to change,” with hope sustained by, “…i’m just a very positive person … also obstinate.”
Embracing brain retraining and nervous system calming for symptom control and recovery: Initial skepticism toward brain retraining shifted to acceptance as participants learned these techniques address fight or flight responses controlling symptoms. Engagement in such programs fostered empowerment and symptom improvement, exemplified by, “…contacted jason and went onto his program because it actually really made sense,” and, “…brain and nervous system processing stress … not sick but stressed.”
Difficulties with genuine rest and relaxation practices essential for recovery: Participants struggled to attain authentic rest and relaxation, such as meditation or naps, often due to ingrained mental resistance. Yet, they recognized this as transformative for managing fatigue, sharing, “…i’m not good at relaxing … people say do meditation … i just struggled with it,” and, “…now i make myself every day lay down and take a nap or do some meditation.”
Emotional struggle from social misunderstandings requiring boundaries to protect well-being: Frustrations arose when participants felt their illness was misunderstood or minimized by others, eliciting anger and emotional distress. To safeguard mental health, they described setting emotional boundaries around symptom discussions and social interactions, as expressed, “when people say silly things sometimes … i can flare up,” and, “…have boundaries … not talking about old symptoms.”
Valuing holistic recovery over symptom-specific treatments to foster comprehensive healing: Participants highlighted that focusing solely on symptom management offered only temporary relief, often leading to frustration. Instead, adopting a holistic approach supporting overall body health facilitated more meaningful recovery. One remarked, “…recovery ended up being not about focusing on symptoms but on supporting my body as a whole…,” contrasted with, “…spent thousands of hours googling symptoms…”
Recognizing the need for personalized recovery plans tailored to unique illness journeys: Participants underscored the importance of customizing recovery strategies to individual symptoms, lifestyles, and experiences. They noted that pacing and treatments must be flexible for effectiveness, stating, “…somebody’s recovery plan … needs to be tailored…”
Deep gratitude for renewed life and profound relationship changes after illness recovery: Upon recovery, participants expressed awe and gratitude for life, describing themselves as, “a walking miracle,” while acknowledging difficulties reconnecting with healthy peers. One shared, “…i have to catch myself and be like you are a walking miracle like this is incredible,” and another noted challenges, “…friends who’ve never been through it … complain about their lives … detachment.”
Challenge and resilience through medical misdiagnosis prompting strong self-advocacy: Participants recounted frustration with delayed or incorrect diagnoses, prompting active engagement in healthcare research and specialist consultation. This self-advocacy was vital for accessing appropriate treatments, illustrated by, “…diagnosed with fibromyalgia ignoring fatigue… no treatment for many years…,” and, “…researching doctors as much as i could … moved to get better care…”
Undertaking drastic lifestyle changes including diet, movement, and toxin avoidance for healing: Participants committed to major changes such as elimination diets, gentle movement rehabilitation, and toxin reduction. Overcoming challenges like sugar addiction was critical to recovery, as one related, “Sugar was a massive one … clearly had physical addiction…,” with rehabilitation described, “…gradually increase ability to move … one to two minutes a day initially…”
Transforming through psychological growth, spiritual awakening, and enhanced self-expression: Chronic illness fostered profound psychological and spiritual development including humility, acceptance, and authentic communication skills. While spiritual experiences sometimes destabilized daily life, they contributed significantly to healing. Participants reflected, “It humbled me … changed me … i wouldn’t say i had spirituality before,” and, “…spiritual awakening.”
Managing anxiety related to pregnancy symptoms with self-compassion and cautious optimism: Participants described fear interpreting pregnancy symptoms amid potential illness relapse, learning to differentiate normal pregnancy experiences with self-compassion and hope, exemplified by, “I keep reminding myself these are normal symptoms… fatigue or relapse?”
Inspired hope and community support from witnessing others’ recoveries: Observing others’ improvements and engaging with supportive communities provided critical hope and motivation, combating isolation. One participant noted, “…so nice to see many people getting past these things,” and, “…people start reaching out to me, i recovered as well…”
Early illness shock and isolation amidst misunderstood symptoms and lack of diagnosis: The onset of chronic illness was described as frightening and confusing, compounded by isolation and misdiagnosis, often being mislabeled as depression, deepening loneliness. A participant recalled, “…felt a bit fluy felt a bit strange felt a bit scared because it felt really weird,” and, “one of the first doctors said she just thought i was depressed.”
Desperation fuels trial of varied alternative therapies seeking relief and recovery: Participants’ urgency and hope led to trying diverse complementary therapies such as acupuncture and reiki, though success varied, as shared, “…went for reiki and this and that,” and, “…flew to america to work with healer.”
Unlocking healing by addressing suppressed anger, trauma, and mind-body connections: Recognizing unresolved anger and trauma as roots of physical symptoms was transformative. Participants linked symptoms to emotional blocks and employed mind-body approaches for relief, as described, “…had suppressed anger and unresolved trauma in my system,” and, “…impact of trauma on my system manifesting physically like a freeze response.”
Engaging in emotion-focused therapy to safely process difficult emotions underlying pain: Intensive therapies like ISTDP enabled participants to confront suppressed emotions such as anger contributing to chronic pain, despite initial fear, facilitating healing. They noted, “…core intervention is emotion focused approach … all emotions healthy,” and, “…therapy helps notice bodily tension often anxiety about anger or rage.”
Gaining validation and hope from medical acceptance and evolving pain recovery treatments: Growing medical recognition of emotion-focused therapies provided participants with validation and optimism, enhancing trust in recovery pathways, observed in, “…most folks come because they accept this approach,” and, “…training doctors in local hospital … growing recognition.”
Adapting mindset to accept therapy as an integral part of chronic illness recovery: Participants emphasized the importance of shifting from viewing therapy as mere coping to embracing it as essential for recovery, integrating mental and physical health perspectives. As one expressed, “…mental health and physical health often thought separate,” and, “…therapy seen as coping not to get better initially.”
Living with chronic symptoms involves acceptance and developing tools to manage setbacks: Recovery is seen as ongoing management requiring acceptance of symptom fluctuations and use of coping strategies. Empowering self-talk and encouragement helped maintain progress, illustrated by, “…it’s a journey rather than a stuck state…,” and, “…great having someone who believes in you that much…”
Experiencing isolation and frustration from long COVID and desire for empathy and validation: Participants with long COVID described enduring fatigue and social isolation, emphasizing a profound need for empathetic understanding to alleviate stigma and loneliness, shared as, “…feel drained all the time … used to be active now barely manage walk…,” and, “…validation would mean the world … proves not making this up…”
Yearning to regain physical energy and normal functioning to reclaim identity: There was a strong desire to restore energy and resume daily activities, intimately tied to coping with identity shifts wrought by chronic illness. A participant noted, “…if i could get some energy back … feel like myself,” while another said, “…don’t recognize person i am now compared to before…”
Struggling with medical uncertainty and frustration over normal test results despite symptoms: Participants experienced confusion and self-doubt when medical tests showed normal results despite severe symptoms, sometimes questioning mental health origins, exemplified by, “…multiple doctors said everything was perfectly fine …,” and, “…thought maybe something mentally causing this.”
Understanding chronic pain as a brain-embedded survival response requiring acceptance: Pain was framed as a permanent neural memory in brain circuits influenced by fight or flight physiology. Acceptance and separation from pain, rather than fighting it, were pivotal for symptom reduction, reflected in, “…pain circuits absolutely permanent like phantom limb pain,” and, “…hardest part is people can’t help but try to fix themselves.”
Breaking free from negative thought cycles to reduce pain and emotional distress: Participants described how separating their identity from intrusive negative thoughts through therapies diminished anxiety and symptom exacerbation by calming physiological arousal, noting, “…separate from the thoughts that’s where behavior therapy comes into play.”
Cultivating joy, safety, and health habits to counteract chronic stress and support healing: Joyful experiences, supportive relationships, and lifestyle habits like healthy sleep, diet, and exercise were vital for nervous system calming and fostering healing, as shared, “…nurture joy if you’re fighting stress not possible,” and, “…address sleep is number one…”
Discovering hope and new perspectives through transformational recovery literature: Influential books offering mind-body explanations for chronic pain inspired hope and therapeutic career paths, serving as anchors in recovery, illustrated by, “…book by john sono … back pain gone … health problems went away,” and, “…personality characteristics true for me and most clients.”
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Number of quotes verified: 156
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| 109 | '...great having someone who believes in you that much...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.166921 | Text 1 ('...great having someone who believes in you that much...') is not contained within Text 2. Text 2 is an extensive discussion about chronic fatigue syndrome or MECFS, its symptoms, recovery experience, and perspectives on symptom comparison, and does not include the phrase or sentence from Text 1. | False |
| 117 | '...validation would mean the world ... proves not making this up...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.178786 | Text 1 contains the phrase '...validation would mean the world ... proves not making this up...,' which is not present in Text 2. Text 2 is a lengthy discussion about chronic fatigue syndrome (ME/CFS), symptoms, recovery, and personal experiences, without matching the specific phrase or sentiment of Text 1. Therefore, Text 1 is not contained within Text 2. | False |
| 138 | '...address sleep is number one...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.181193 | Text 1 ('...address sleep is number one...') is not contained within Text 2. Text 2 is a long transcript discussing chronic fatigue syndrome and ME/CFS symptoms, recovery experiences, and viewpoints on symptom comparison, but it does not contain the exact phrase or sentence from Text 1. | False |
| 113 | '...journey ... can't keep comparing yourself...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.186400 | Text 1 ('...journey ... can't keep comparing yourself...') is not explicitly contained within Text 2. However, Text 2 extensively discusses the concept of the illness journey and emphasizes not comparing symptoms or results with others, which aligns with the sentiment of Text 1. But the exact wording of Text 1 does not appear in Text 2. | False |
| 41 | '...put on cocktail to boost mitochondria and fight infections...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.199281 | Text 1 ('...put on cocktail to boost mitochondria and fight infections...') is not contained within Text 2, which is a long dialogue about chronic fatigue syndrome (ME/CFS) focusing on symptom management, recovery, and the experience of the illness rather than mentioning any specific treatments or cocktails. | False |
| 43 | '...removed toxic ingredients and used water filtration...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.203242 | Text 1, which mentions removing toxic ingredients and using water filtration, is not contained within Text 2. Text 2 is a detailed discussion about chronic fatigue syndrome (ME/CFS), symptoms, recovery experiences, and the importance of a holistic approach, without any mention of removing toxic ingredients or water filtration. | False |
| 115 | '...people don’t see struggle you go through ... makes you feel alone...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.209129 | Text 1 is not contained within Text 2. Text 1 is a short fragment about feeling alone due to struggle, while Text 2 is a detailed transcript discussing chronic fatigue syndrome, symptom management, recovery, and the experience of sharing stories and helping others with the condition. | False |
| 40 | '...mitochondrial disease called mitochondrial dna depletion syndrome...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.216110 | Text 1, which mentions "mitochondrial disease called mitochondrial dna depletion syndrome," is not contained within Text 2. Text 2 is focused on chronic fatigue syndrome (ME/CFS), discussing symptoms, recovery experiences, and perspectives on symptom comparison, without reference to mitochondrial DNA depletion syndrome. | False |
| 123 | '...hard to accept not doing what used to do...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.221910 | Text 1 ('...hard to accept not doing what used to do...') is not contained within Text 2. Text 2 is a lengthy discussion about chronic fatigue syndrome (ME/CFS), symptom comparison, and recovery perspectives, but the specific phrase in Text 1 does not appear in the text. | False |
| 51 | '...normal to have headaches when pregnant, normal to feel tired...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.225348 | Text 1 is not contained within Text 2. Text 1 is a short phrase about headaches and tiredness during pregnancy, while Text 2 is a long transcript discussing chronic fatigue syndrome (ME/CFS), symptom management, and recovery, without mentioning pregnancy or the exact phrase from Text 1. | False |
| 46 | '...gradually increase ability to move ... one to two minutes a day initially...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.237140 | Text 1 ('...gradually increase ability to move ... one to two minutes a day initially...') is not contained within Text 2. Text 2 is a detailed conversation about chronic fatigue syndrome or MECFS, focusing on symptom management, recovery experiences, and the challenges of comparing symptoms, without mentioning gradual movement increase or specific time frames like one to two minutes a day initially. | False |
| 122 | '...don’t recognize person i am now compared to before...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.244112 | Text 1 ('...don’t recognize person i am now compared to before...') is not contained within Text 2. Text 2 is a detailed conversation about chronic fatigue syndrome (ME/CFS), symptoms, recovery, and the value of not comparing symptoms with others. Text 1 is a short sentence expressing a feeling of personal change, which does not appear anywhere in Text 2. | False |
| 27 | '...pacing has to be tailored individually because their life is so different...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.247281 | Text 1, which states "...pacing has to be tailored individually because their life is so different...", is contained within Text 2. In the latter part of Text 2, the discussion mentions that pacing and recovery plans must be individualized due to differences in people's lives, which matches the content of Text 1. | True |
| 107 | '...positive affirmations and growth mindset...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.249284 | Text 1 contains a brief phrase about 'positive affirmations and growth mindset,' which is not mentioned in the provided Text 2. Text 2 discusses chronic fatigue syndrome (ME/CFS), symptoms, recovery experiences, and approaches to healing, but does not mention positive affirmations or growth mindset. | False |
| 26 | '...somebody's recovery plan ... needs to be tailored...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.253378 | Text 1: '...somebody's recovery plan ... needs to be tailored...' is indeed contained within Text 2. In Text 2, near the end, there is a statement that emphasizes the importance of tailoring recovery plans individually, reflecting the same idea expressed in Text 1. | True |
| 106 | '...didn't have mental stamina to do that before...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.253733 | Text 1 ('...didn't have mental stamina to do that before...') is not contained within Text 2. Text 2 is a detailed transcript discussing symptoms, experiences, and perspectives on chronic fatigue syndrome (ME/CFS) and recovery without mentioning the phrase or idea of lacking mental stamina explicitly as in Text 1. | False |
| 39 | '...linked with doctors testing underlying infections...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.255255 | Text 1 is not contained within Text 2. Text 1 is a short fragment mentioning doctors testing underlying infections, while Text 2 is a long discussion about chronic fatigue syndrome, symptom management, and recovery experiences, with no direct repetition or containment of the exact phrase from Text 1. | False |
| 35 | '...i really struggle with people who seem physically able but choose not to...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.258786 | Text 1 is a short statement about struggling with people who seem physically able but choose not to do something. Text 2 is a lengthy transcript discussing chronic fatigue syndrome (ME/CFS), symptom comparison, and recovery perspectives without mentioning or referencing the exact sentence or concept of Text 1. Therefore, Text 1 is not contained within Text 2. | False |
| 119 | '...fatigue so overwhelming even making meal feels like climbing mountain...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.274245 | Text 1 contains a brief statement about overwhelming fatigue making even simple tasks like making a meal feel like climbing a mountain. Text 2 is a long, detailed discussion about chronic fatigue syndrome (ME/CFS), the wide range of symptoms, and the challenges of symptom comparison and recovery approaches. While Text 2 discusses overwhelming fatigue as one of many symptoms, the exact sentence from Text 1 is not contained within Text 2. The idea of overwhelming fatigue is present, but the specific phrasing is not. | False |
| 42 | '...dramatically change diet using food as medicine...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.275040 | Text 1 is not contained within Text 2. Text 1 is a short phrase about changing diet using food as medicine, whereas Text 2 is a lengthy transcript about experiences and views on chronic fatigue syndrome or ME/CFS, focusing on symptoms, recovery, and holistic healing without specifically mentioning the phrase from Text 1. | False |
| 31 | '...writing my story took forever because it's traumatizing going back...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.276544 | Text 1 is a short personal statement about the difficulty and trauma of writing a recovery story. Text 2 is a long transcript of a discussion about chronic fatigue syndrome (ME/CFS), symptom management, recovery perspectives, and personal boundaries related to sharing illness experiences. Text 1 content is not explicitly contained in Text 2, but Text 2 includes a related mention of writing a recovery story being traumatizing, similar to Text 1's sentiment. So, Text 1 is not fully contained in Text 2, but the idea is referenced. | False |
| 102 | '...multiple doctors said everything was perfectly fine ...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.278089 | Text 1 ('...multiple doctors said everything was perfectly fine ...') is not contained within Text 2. Text 2 is a long discussion about chronic fatigue syndrome (ME/CFS), its symptoms, and the challenges of focusing on symptoms versus holistic recovery, but it does not include the specific phrase or the statement given in Text 1. | False |
| 111 | '...it's a journey rather than a stuck state...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.296699 | Text 1, "...it's a journey rather than a stuck state...", is a phrase that conveys a holistic perspective on illness or recovery. Text 2 contains a detailed discussion about chronic fatigue syndrome (ME/CFS) recovery, emphasizing a holistic and individualized approach rather than focusing solely on symptoms, which aligns with the sentiment of Text 1. However, the exact phrase from Text 1 does not appear verbatim within Text 2. | False |
| 100 | '...started to get really tired ... no motivation to do activities...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.298902 | Text 1, which mentions "started to get really tired" and "no motivation to do activities," is not explicitly contained within Text 2. While Text 2 discusses symptoms of chronic fatigue syndrome/ME/CFS, including debilitating fatigue and related symptoms, the exact phrases from Text 1 do not appear verbatim in Text 2. | False |
| 30 | '...have boundaries ... not talking about old symptoms ...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.303106 | Text 1 ('...have boundaries ... not talking about old symptoms ...') is contained within Text 2. Specifically, in Text 2, SPEAKER_01 mentions having boundaries and choosing not to talk about old symptoms with other people, which aligns with the phrase in Text 1. | True |
| 38 | '...researching doctors as much as i could ... moved to get better care...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.308546 | Text 1 is not contained within Text 2. Text 1 is a brief statement about researching doctors and moving for better care, while Text 2 is a lengthy transcript discussing chronic fatigue syndrome, symptom management, personal recovery experiences, and advice on not comparing symptoms with others. The content and wording between the two texts do not overlap. | False |
| 121 | '...keep hoping for a cure to move on with life...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.309977 | Text 1 ('...keep hoping for a cure to move on with life...') is not contained within Text 2. Text 2 is a detailed conversation about chronic fatigue syndrome (ME/CFS) focusing on symptoms, recovery experiences, and the challenges of comparing symptoms, but it does not include the exact phrase or sentence from Text 1. | False |
| 23 | '...don't get too caught up on comparing symptoms...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.312343 | Yes, text 1 ('...don't get too caught up on comparing symptoms...') is contained within text 2. This phrase appears in the part of the text where the speaker advises against focusing too much on comparing symptoms or test results with others, encouraging a more individualized and holistic approach to recovery from mecfs/chronic fatigue syndrome. | True |
| 28 | '...spent thousands of hours googling symptoms...', '...almost poisoning myself by buying organic elderberries...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.313000 | Text 1 contains phrases about spending thousands of hours googling symptoms and almost poisoning oneself by buying organic elderberries. Text 2 includes similar statements and expands on the experiences related to chronic fatigue syndrome (ME/CFS), including the speaker's story of researching symptoms extensively and experiencing challenges like using elderberries incorrectly. Therefore, Text 1 is contained within Text 2 as part of the speaker's narrative. | True |
| 114 | '...feel drained all the time ... used to be active now barely manage walk...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.320816 | Text 1 expresses a general feeling of being drained and a decrease in activity level, which could be symptoms of chronic fatigue or a related condition. Text 2 is a detailed discussion on chronic fatigue syndrome (ME/CFS), mentioning a variety of symptoms including fatigue and reduced activity. However, Text 1's exact sentences are not literally contained within Text 2. Text 1 is more of a brief symptom statement, while Text 2 is a comprehensive conversation about symptoms and recovery approaches for ME/CFS. | False |
| 116 | '...sometimes it feels like people think it’s in your head...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.332099 | Text 1 expresses a feeling about others doubting the reality of a condition being 'in your head.' Text 2 is a detailed discussion by speakers about chronic fatigue syndrome/ME/CFS, focusing on symptoms, recovery, and the challenges of symptom comparison. Text 1 is a short phrase and sentiment, while Text 2 is a long, comprehensive transcript. There is no exact phrase or sentence from Text 1 explicitly contained within Text 2, but the general idea of feeling misunderstood or doubted is indirectly related to the content of Text 2. | False |
| 47 | '...couldn't rest my way out of this i couldn't just lay in bed...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.336117 | Text 1 is not contained within Text 2. Text 1 is a short phrase about not being able to rest or lay in bed, whereas Text 2 is a lengthy discussion about chronic fatigue syndrome (ME/CFS), its symptoms, the experience of recovering, and the issues with focusing on symptoms or comparing symptoms with others. | False |
| 29 | '...needed a more comprehensive strategy rather than symptom by symptom fixes...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.336376 | Yes, text 1 ('...needed a more comprehensive strategy rather than symptom by symptom fixes...') is contained within text 2. In text 2, one of the speakers explains that targeting specific symptoms in isolation was never a complete healing method and that a more comprehensive, holistic approach was necessary for recovery from chronic fatigue syndrome/MECFS. This matches the concept expressed in text 1. | True |
| 22 | '...people want to compare their symptoms against mine... to see if we're the same...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.338528 | Text 1 is contained within Text 2. Specifically, the phrase from Text 1, "...people want to compare their symptoms against mine... to see if we're the same..." is found in Text 2, where the speaker discusses how people reach out to compare their symptoms with theirs to find similarities or differences. | True |
| 25 | '...if i had pain i might take painkillers or see doctor for sedatives...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.342227 | Text 1, which mentions taking painkillers or seeing a doctor for sedatives if experiencing pain, is indeed contained within Text 2. Text 2 includes a detailed conversation about chronic fatigue syndrome and mentions the approach of managing symptoms with painkillers and prescribed sedatives as part of symptom management rather than full recovery. | True |
| 36 | '...diagnosed with fibromyalgia ignoring fatigue... no treatment for many years...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.358500 | Text 1 is not contained within Text 2. Text 1 is a brief statement about fibromyalgia without treatment, while Text 2 is a lengthy transcript discussing chronic fatigue syndrome/MECFS, its symptoms, recovery approaches, and the perspective on symptom management and comparison. | False |
| 120 | '...tried so many treatments but nothing works...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.360821 | Text 1 ('...tried so many treatments but nothing works...') is not contained within Text 2. Text 2 is a lengthy conversation about chronic fatigue syndrome/MECFS focusing on the complexity of symptoms and recovery approaches, but it does not contain the exact phrase or sentence from Text 1. | False |
| 53 | '...people start reaching out to me, i recovered as well...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.445474 | Text 1 ("...people start reaching out to me, I recovered as well...") is indeed contained within Text 2. In Text 2, a speaker mentions that after sharing their full recovery story from ME/CFS, many people start reaching out to them, which matches the essence of Text 1. | True |
| 24 | '...symptom management that i did was more palliative not about recovery...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.479876 | Text 1: '...symptom management that i did was more palliative not about recovery...' is a phrase found verbatim in Text 2, spoken by SPEAKER_00, describing their experience with symptom management during recovery from chronic fatigue syndrome/MECFS. | True |
| 20 | '...recovery ended up being not about focusing on symptoms but on supporting my body as a whole...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.517444 | 'recovery ended up being not about focusing on symptoms but on supporting my body as a whole' is a sentence that appears verbatim within the longer speech in Text 2. So, yes, Text 1 is contained within Text 2. | True |
| 21 | '...as i slowly improved overall my symptoms slowly decreased...' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 4.575674 | 1.004053 | 31290 | 31590 | 0.000000 | 0.567918 | Yes, text 1 ('...as i slowly improved overall my symptoms slowly decreased...') is contained within text 2. It appears in a part of the conversation about how recovery from MECFS is a holistic process and symptoms decrease slowly over time. | True |
| 92 | '...self criticism activates danger alarm in brain ... feeds symptoms' | aS8CQtc9DmA.txt | t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don' | SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare\n\nSPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon\n | 5.846852 | 1.047333 | 31290 | 32220 | 0.000000 | 0.297276 | Text 1 states "self criticism activates danger alarm in brain ... feeds symptoms", which is a specific statement about self-criticism affecting symptoms. Text 2 is a detailed dialogue discussing the complexity of symptoms in chronic fatigue syndrome or MECFS, the variability of symptoms, the challenges of symptom comparison, and the importance of a holistic approach rather than focusing on individual symptoms. Text 2 does not contain the exact phrase or concept about self-criticism activating the danger alarm in the brain or feeding symptoms. Therefore, Text 1 is not contained within Text 2. | False |
| 34 | '...friends who've never been through it ... complain about their lives ... detachment' | ba2LcetNybI.txt | on't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would g | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 6.608323 | 1.444229 | 40320 | 41040 | 0.000000 | 0.630570 | Text 1 is contained within Text 2. The phrase about having friends who have never been through chronic illness, complaining about their lives, and feeling detachment is directly mentioned in Text 2 during the conversation. | True |
| 142 | '...don't believe me ... connect to skepticism ... starting point' | as7I55hY29k.txt | 'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 7.261965 | 1.031066 | 145320 | 146040 | 0.000000 | 0.146199 | Text 1 contains fragmented phrases that appear somewhat related to skepticism and starting points, but these exact phrases or segments are not contained within the very detailed and long transcript of Text 2, which is a conversation about a journey with ME/CFS, focusing on emotional and psychological aspects of recovery, without direct or explicit mention of those phrases in Text 1. | False |
| 8 | '...when he explaining ... your body has switched down some of the genes ... fight too much ... made sense' | bRidO1PiZJs.txt | and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 7.978657 | 1.004053 | 11130 | 11850 | 0.000000 | 0.312006 | Yes, text 1 is contained within text 2. Text 1 is a partial quote from Speaker 01 in text 2 discussing how their body has switched down some genes and they were stuck in a fight or flight mode, which starts making sense to them. This matches a portion of the detailed interview in text 2. | True |
| 104 | '...program has hypnosis type of effect ... initially skeptical' | ba2LcetNybI.txt | to heal so what happened when you initially went to the doctors what did | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 8.085517 | 1.315358 | 43110 | 43182 | 0.043360 | 0.179112 | Text 1 ('...program has hypnosis type of effect ... initially skeptical') is not contained within Text 2. Text 2 is a transcript of an in-depth interview discussing chronic illness, recovery, diet, movement, and personal experiences, with no mention of a program having a hypnosis effect or skepticism related to such a program. | False |
| 16 | '...i'm just a very positive person ... also obstinate' | bRidO1PiZJs.txt | gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes wel | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 8.780772 | 1.004053 | 11550 | 12270 | 0.000000 | 0.633570 | Text 1 ('...i'm just a very positive person ... also obstinate') is contained within Text 2. It is a direct quote from SPEAKER_01 in Text 2 during the interview segment. | True |
| 44 | 'Sugar was a massive one ... clearly had physical addiction...' | ba2LcetNybI.txt | then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 9.490297 | 1.004053 | 51660 | 52380 | 0.000000 | 0.669308 | Text 1 is contained within Text 2. Specifically, Text 1's content about sugar being a major issue with physical addiction appears in the detailed transcript of Text 2, where Katie Gardner discusses her recovery journey and mentions sugar as a massive challenge for her, noting her intense physical addiction to it. | True |
| 85 | '...felt it was being done to me ... perpetuating trauma' | as7I55hY29k.txt | nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 9.499225 | 1.012208 | 130383 | 130464 | 0.054127 | 0.330275 | Text 1 is contained within text 2. The phrase about feeling like it was being done to her and perpetuating trauma is present in the detailed story shared by the speaker discussing her experience with chronic fatigue syndrome and the emotional impact of the treatments and interactions with medical professionals. | True |
| 118 | '...if i could get some energy back ... feel like myself' | as7I55hY29k.txt | 'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 9.737414 | 1.218705 | 145320 | 146040 | 0.000000 | 0.265686 | Text 1 is a short quote about wanting to regain energy and feel like oneself. Text 2 is a long transcript of an interview discussing a journey of recovery from chronic fatigue syndrome (CFS). The quote in Text 1 relates conceptually to the themes in Text 2, particularly the desire to regain energy and return to feeling like oneself after illness. However, the exact phrase from Text 1 does not appear verbatim anywhere in Text 2. Therefore, Text 1 is not contained within Text 2 as an exact match. | False |
| 98 | '...spent three hours on phone ... finally heard the truth ... gave me hope' | acWL9FBKr3o.txt | get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn' | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 10.265524 | 1.078766 | 76650 | 77370 | 0.000000 | 0.288811 | Text 1 is not contained within Text 2. Text 1 is a short, vague statement about spending three hours on the phone and finally hearing the truth that gave hope, while Text 2 is a long, detailed transcript of an interview about chronic fatigue recovery, with no mention of the specific experience described in Text 1. | False |
| 112 | '...have tools to fix that ... life is stressful ... i can refocus' | aGKbypa8fhI.txt | give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program's working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there's still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i'm still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that's a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because t | SPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i've learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today's interview is an example of just that hi everyone i'm ralan if you're new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i'm super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let's dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn't have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn't have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i've had jason on the channel before that's jason mctiernan's program correct i can thrive yeah i've interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he's a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you're going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i'm by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we're in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you're even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i'm training for a full marathon with some of my friends and before i don't think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it's a horrible thing to go through but thankfully there's a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn't realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that's more of a journey rather than oh i'm stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it's meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you're going through the program if someone's watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you'll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there's online videos that he'll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you're doing great and it's just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he'd give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program's working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there's still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i'm still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that's a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we're going to keep going to keep having symptoms and different things in our lives to let us know what's going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i've got the tools i know what to do i can get past it yeah so for you have anything that you'd want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you'd say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you're feeling even if you haven't found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they're facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he'll always tell you that you got this and it's a journey so can't just keep comparing yourself to where you've been like you're on the right path to recovery\n\nSPEAKER_00: amazing well i'm so so happy for you kelly this is incredible i'm happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it's always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don't want people watching to feel discouraged if their recovery doesn't happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you're interested in learning more about jason mctiernan and his program i can thrive we'll put a video here to help you get a better sense of what that's all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n | 10.268375 | 1.011289 | 166740 | 167460 | 0.000000 | 0.463483 | Text 1 consists of the phrases "have tools to fix that," "life is stressful," and "i can refocus." In Text 2, towards the end of the interview, the speaker Kelly mentions having "tools to fix that" in the context of feeling tired and stressed moments, saying she can "refocus and use these tools to pass it." Thus, the content of Text 1 is indeed contained within Text 2, as these phrases or their variants appear in the interview dialogue. | True |
| 88 | '...internal state of nonresistance or peace ... it just kind of happened' | as7I55hY29k.txt | had been studying about it but it kind of happened and interestingly that went on | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 10.297978 | 1.004508 | 119150 | 119231 | 0.064516 | 0.372658 | Text 1, which mentions an 'internal state of nonresistance or peace,' is indeed a phrase found within Text 2. In Text 2, Rebecca Toland describes reaching a state of mental peace and nonresistance during her recovery journey from ME/CFS. Therefore, Text 1 is contained within Text 2. | True |
| 101 | '...laying in bed would get canker sores ... not feeling the best' | aGKbypa8fhI.txt | these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to | SPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i've learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today's interview is an example of just that hi everyone i'm ralan if you're new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i'm super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let's dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn't have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn't have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i've had jason on the channel before that's jason mctiernan's program correct i can thrive yeah i've interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he's a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you're going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i'm by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we're in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you're even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i'm training for a full marathon with some of my friends and before i don't think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it's a horrible thing to go through but thankfully there's a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn't realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that's more of a journey rather than oh i'm stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it's meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you're going through the program if someone's watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you'll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there's online videos that he'll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you're doing great and it's just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he'd give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program's working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there's still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i'm still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that's a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we're going to keep going to keep having symptoms and different things in our lives to let us know what's going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i've got the tools i know what to do i can get past it yeah so for you have anything that you'd want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you'd say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you're feeling even if you haven't found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they're facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he'll always tell you that you got this and it's a journey so can't just keep comparing yourself to where you've been like you're on the right path to recovery\n\nSPEAKER_00: amazing well i'm so so happy for you kelly this is incredible i'm happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it's always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don't want people watching to feel discouraged if their recovery doesn't happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you're interested in learning more about jason mctiernan and his program i can thrive we'll put a video here to help you get a better sense of what that's all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n | 10.316252 | 1.050105 | 160825 | 160912 | 0.054201 | 0.580585 | Text 1 contains the phrase "laying in bed would get canker sores ... not feeling the best" which is exactly quoted by SPEAKER_01 in Text 2 when describing symptoms experienced during their illness. Therefore, Text 1 is contained within Text 2. | True |
| 90 | '...brain and nervous system processing stress ... not sick but stressed' | as7I55hY29k.txt | with her she said rebecca you're not sick you know and i think she kind | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 10.375082 | 1.254747 | 121680 | 121751 | 0.056757 | 0.306870 | Text 1 states a concept about the brain and nervous system processing stress and that the person is not sick but stressed. In the extensive Text 2 transcript, there is a discussion about chronic fatigue syndrome (CFS), the role of the brain and nervous system in symptoms, and how stress and trauma affected the person's health journey. The idea that the brain and nervous system could be stuck in a stress response pattern and that this could contribute to symptoms is indeed covered in Text 2. Thus, the concept from Text 1 is contained within the broader context of Text 2. However, the exact phrase from Text 1 does not appear verbatim in Text 2, but the content meaning is expressed extensively. | True |
| 128 | '...unconscious brain keeps you alive ... conscious brain only small part' | aOUUTEeIiS0.txt | million times stronger than your conscious brain so your conscious brain unconscious | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 10.401570 | 1.002215 | 179509 | 179593 | 0.080000 | 0.569502 | Text 1 ('...unconscious brain keeps you alive ... conscious brain only small part') is contained within Text 2. In Text 2, Dr. David Hanscom explicitly discusses the relationship between the unconscious brain and conscious brain, stating that the unconscious brain processes about eleven million bits of information per second, while the conscious brain processes only about forty bits per second, and emphasizing that the unconscious brain keeps you alive while the conscious brain is a smaller part. This matches the content of Text 1, indicating that Text 1 is indeed part of Text 2. | True |
| 78 | '...a lot of my trauma wasn't personal but was ancestral ... from family line' | acWL9FBKr3o.txt | t of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspe | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 10.839116 | 1.018109 | 96600 | 97320 | 0.000000 | 0.635212 | Text 1 states that a lot of the trauma experienced was ancestral, from the family line. In text 2, Speaker 00 mentions that much of her trauma wasn't personal but ancestral, taken on from her family line. Therefore, text 1 is contained within text 2 as it repeats a similar concept about ancestral trauma being part of the healing journey. | True |
| 97 | '...journaling your anger ... bottled up anger can be very harmful' | aTvSX_toNL4.txt | actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00 | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 10.980494 | 1.335272 | 225472 | 225554 | 0.082447 | 0.337628 | Text 1 is not contained within Text 2. Text 1 is a brief statement about journaling anger and its harmful effects when bottled up, whereas Text 2 is a lengthy transcript of an interview discussing chronic pain, its psychological aspects, and treatments, without mentioning journaling anger specifically. | False |
| 12 | '...i'm not good at relaxing ... people say do meditation ... i just struggled with it' | ba2LcetNybI.txt | had a hard time with soy and so i struggled with some of those components of it | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 11.221121 | 1.026246 | 49806 | 49885 | 0.059140 | 0.352588 | Text 1, which is a short statement about struggling with meditation and relaxation, is not contained within Text 2. Text 2 is a detailed interview transcript focusing on chronic illness, recovery, and personal experience, and does not include the content or the specific phrasing of Text 1. | False |
| 96 | '...some psychotherapy was helpful ... talk through griefs' | as7I55hY29k.txt | psychotherapy was helpful just to kind of talk through some of these some of these griefs | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 11.246264 | 1.669708 | 108265 | 108354 | 0.054274 | 0.836930 | Text 1 contains the phrase "some psychotherapy was helpful ... talk through griefs." In Text 2, there is a section where the speaker (Rebecca Toland) mentions psychotherapy being helpful to talk through griefs during her illness journey. Therefore, the content of Text 1 is indeed contained within Text 2 as part of a broader discussion on the speaker's experience with chronic fatigue syndrome and recovery. | True |
| 57 | '...didn't know what was going on ... really scary time' | acWL9FBKr3o.txt | d not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low an | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 11.441002 | 1.475361 | 74130 | 74850 | 0.000000 | 0.444194 | Yes, text 1 is contained within text 2. In text 2, the speaker describes the initial phase of becoming unwell with chronic fatigue, mentioning that it was a "really scary time" and expressing confusion and fear about what was happening, which matches the sentiment and phrasing of text 1. | True |
| 146 | '...core intervention is emotion focused approach ... all emotions healthy' | aTvSX_toNL4.txt | idea is all emotions are healthy we're born emotional | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 11.553937 | 1.033696 | 222600 | 222653 | 0.056757 | 0.614842 | Text 1 states a core intervention as an emotion-focused approach and notes that all emotions are healthy. Text 2 features a detailed interview where the speaker Doug Goufrida discusses his experience with chronic pain and his use of intensive short-term dynamic psychotherapy (ISTDP), which he emphasizes as an emotion-focused approach where all emotions are healthy and important for healing. The concepts from Text 1 are indeed contained in Text 2 as part of the therapeutic approach detailed by Doug. | True |
| 4 | 'i wouldn't let myself not go ... i'd wake up at five o'clock ... just went walking' | bRidO1PiZJs.txt | but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 12.130676 | 1.357650 | 4492 | 4581 | 0.107807 | 0.639447 | Text 1 is a short quote about waking up early to go walking despite tiredness, which is a sentiment expressed by the speaker in Text 2 (Irene) when she talks about waking up at five o'clock and going for a walk even though she was very tired. So yes, Text 1 is contained within the content and theme of Text 2, as it reflects part of Irene's experience shared in the interview. | True |
| 18 | '...i've learnt to listen to myself listen to my body ... work out what my triggers are' | bRidO1PiZJs.txt | go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme wi | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 12.365172 | 1.004053 | 10710 | 11430 | 0.000000 | 0.639395 | Text 1 is contained within Text 2. In the transcript (Text 2), Irene O'Brien mentions that she has "learnt to listen to myself, listen to my body" and to "work out what my triggers are," which matches the content of Text 1. | True |
| 149 | '...ISTDP difficult but supportive ... gradual emotional threshold building' | aTvSX_toNL4.txt | most people with chronic pain or emotional thresholds very low and so what we want | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 12.454813 | 1.163342 | 233951 | 234033 | 0.084656 | 0.339450 | Text 1 appears to be a brief reference to ISTDP (Intensive Short-Term Dynamic Psychotherapy) being difficult but supportive with gradual emotional threshold building. Text 2 is a detailed interview discussing chronic pain recovery, the book by Dr. John Sarno, and the use of ISTDP as a therapy method. Text 1's content is indeed reflected and expanded upon in Text 2, especially in the explanation of ISTDP as a difficult but supportive therapy that involves gradually increasing emotional capacity. Therefore, Text 1 is contained within Text 2 as a summarized concept. | True |
| 153 | '...therapy seen as coping not to get better initially' | aOUUTEeIiS0.txt | burns which is cognitive behavioral therapy i did have a psychologist and | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 12.497190 | 1.057214 | 177384 | 177457 | 0.106494 | 0.321148 | Text 1 ('...therapy seen as coping not to get better initially') is not contained within Text 2. Text 2 is a long, detailed conversation about chronic illness, pain, physiology, and healing approaches, but it does not include the exact phrase or statement from Text 1. | False |
| 93 | '...talk to myself in a compassionate way ... what do you want right now' | as7I55hY29k.txt | myself i'm so sorry what do you what do you want or need right now instead of just | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 12.782250 | 1.121270 | 136749 | 136831 | 0.072289 | 0.494850 | Text 1 ('...talk to myself in a compassionate way ... what do you want right now') is contained within text 2. In text 2, the speaker describes talking to themselves compassionately, asking what they want or need when managing their symptoms and emotions during recovery from chronic fatigue syndrome (CFS). This matches the phrase and context in text 1. | True |
| 151 | '...training doctors in local hospital ... growing recognition' | aTvSX_toNL4.txt | patients because you know there's a growing recognition even in medical school now they | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 12.808251 | 2.108686 | 231940 | 232027 | 0.054054 | 0.600880 | Text 1 is a short fragment, '...training doctors in local hospital ... growing recognition', which matches content found near the end of Text 2 where Dr. Doug Goufrida mentions training doctors in a local hospital and growing recognition of the therapy. Therefore, Text 1 is contained within Text 2. | True |
| 72 | '...spiritual awakening' | acWL9FBKr3o.txt | kundalini or spiritual some kind of spiritual awakening during my healing journey which | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 13.271813 | 1.986064 | 88947 | 89034 | 0.051421 | 0.562404 | Text 1 ('...spiritual awakening') is a very brief phrase and does not appear as an exact or direct excerpt anywhere within Text 2, which is a lengthy interview transcript discussing chronic fatigue and recovery including a mention of a 'spiritual awakening' but not the exact phrase as in Text 1. | False |
| 108 | '...text messages saying i climbed mountain ... i know you can do it' | as7I55hY29k.txt | kind of learn these lessons and i know it's at some point that's really | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 13.381821 | 1.014895 | 145767 | 145838 | 0.043243 | 0.221623 | Text 1 is not contained within Text 2. Text 1 consists of short, informal sentences about climbing a mountain and encouragement, while Text 2 is a lengthy, detailed interview transcript about a chronic fatigue syndrome recovery journey with no mention of climbing mountains or similar phrases. | False |
| 89 | '...watching symptoms but felt peace' | as7I55hY29k.txt | didn't actually shift the physical symptoms but i sort of was it's not like i wanted | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 13.437964 | 1.067923 | 119256 | 119340 | 0.069149 | 0.372945 | Text 1 ('...watching symptoms but felt peace') is not contained within Text 2, which is a long transcript of an interview about a journey with ME/CFS. The exact phrase or sentence from Text 1 does not appear in Text 2. | False |
| 83 | '...relieved to have diagnosis ... no cure' | acWL9FBKr3o.txt | get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn' | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 13.484336 | 1.572965 | 76650 | 77370 | 0.000000 | 0.318950 | Text 1 contains the phrase "...relieved to have diagnosis ... no cure" which is a very brief snippet. Text 2 is a lengthy transcript of an interview discussing recovery from chronic fatigue and related conditions. While the themes overlap around chronic illness and diagnosis, the exact phrase from Text 1 does not appear explicitly in Text 2. Therefore, Text 1 is not contained within Text 2 verbatim. | False |
| 94 | 'perfectionist check, people pleasers check ... really conscientious' | as7I55hY29k.txt | like perfectionist check right people pleasers check maybe you're doing things for | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 13.591683 | 1.240797 | 138399 | 138481 | 0.240469 | 0.650861 | Text 1, which contains the phrases 'perfectionist check, people pleasers check ... really conscientious', is not contained within Text 2. Text 2 is a long transcript of an interview discussing a health journey and chronic fatigue syndrome recovery, and it does not include the specific phrases or sentences from Text 1. | False |
| 59 | '...it was a very tough time' | acWL9FBKr3o.txt | i mean it is a journey but can be very tough tough tough experience becoming | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 13.941866 | 1.017129 | 87490 | 87566 | 0.064603 | 0.440084 | Text 1, the phrase "...it was a very tough time," is indeed contained within Text 2. It appears in Speaker 00's narrative describing their experience during their illness journey. | True |
| 2 | '...walking like ten miles every day ... i picked up a couple of viruses ... can't get out of bed' | bRidO1PiZJs.txt | like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 13.960721 | 1.004053 | 3570 | 4290 | 0.000000 | 0.651828 | Yes, text 1 is contained within text 2. Specifically, text 1 is a direct excerpt from the longer narrative given by SPEAKER_01 describing their experience with ME/CFS, including the part about walking ten miles every day, picking up viruses, and the inability to get out of bed. | True |
| 124 | '...biggest factor keeping people in pain is anger ... fight or flight sensation' | aOUUTEeIiS0.txt | generated by your body when you're in fight or flight so you feel anxious your body says | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 14.145766 | 1.173138 | 177909 | 177997 | 0.061662 | 0.424337 | Yes, text 1 is contained within text 2. The phrase "biggest factor keeping people in pain is anger" from text 1 appears in text 2 during Dr. David Hanscom's explanation about the physiological impact of anger and anxiety on chronic pain. | True |
| 17 | 'never ever felt ... i was almost like in denial' | bRidO1PiZJs.txt | e up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probab | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 14.200542 | 1.056510 | 11760 | 12480 | 0.000000 | 0.432789 | Yes, text 1 "never ever felt ... i was almost like in denial" is contained within text 2. In text 2, speaker 1 says, "i never ever felt in fact i was almost like in denial," which closely matches text 1. | True |
| 68 | '...looking at symptoms ... emotion underlying this symptom' | acWL9FBKr3o.txt | about symptoms and what is there an emotion underlying this symptom that's what i remember from | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 14.760230 | 1.514173 | 82486 | 82581 | 0.085447 | 0.729085 | Text 1 is contained within Text 2. In Text 2, the speaker Frances Goodall discusses looking at symptoms and exploring the emotions underlying those symptoms as part of her recovery approach from chronic fatigue and ME/CFS. This concept directly matches the phrase in Text 1. | True |
| 144 | '...book by john sono ... back pain gone ... health problems went away' | aTvSX_toNL4.txt | only that but a lot of the other health problems i had suffered with for years went | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 15.284328 | 1.296917 | 215809 | 215892 | 0.067114 | 0.483025 | Text 1 is a short excerpt mentioning "a book by John Sono" that helped with back pain and other health problems going away. Text 2 is a detailed interview/transcript where Dr. Doug Goufrida discusses his recovery from chronic back pain after reading a book by Dr. John Sarno, which inspired his career in chronic pain therapy. Given the similar context, mention of John Sarno's book, and the description of back pain recovery, Text 1 is indeed contained within the thematic content of Text 2. | True |
| 14 | 'when people say silly things sometimes ... i can flare up' | bRidO1PiZJs.txt | temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 15.314355 | 1.397668 | 20395 | 20498 | 0.232836 | 0.733165 | Text 1, "when people say silly things sometimes ... i can flare up," is contained within Text 2. In the interview Transcript (Text 2), the speaker, Irene, says: "i do have to at the moment try and control my wouldn't say temper i can flare up when people say silly things sometimes," which matches the content of Text 1. | True |
| 3 | '...had to retire at that stage ... kept pushing myself' | bRidO1PiZJs.txt | oke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 15.488280 | 1.004053 | 3780 | 4500 | 0.000000 | 0.598398 | Yes, the phrase 'had to retire at that stage ... kept pushing myself' from Text 1 is contained within Text 2. Specifically, the speaker mentions having to retire at a stage due to their condition and then continuing to push themselves afterward. | True |
| 6 | '...i am going to have to make life changes ... my life is going to have to change' | bRidO1PiZJs.txt | ng it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 15.943956 | 1.004053 | 12810 | 13530 | 0.000000 | 0.541153 | Text 1 contains two sentences about making life changes and life needing to change. In Text 2, a similar sentiment is expressed by speaker_01 when discussing having to make life changes and accepting a new way of living with ME/CFS. Specifically, speaker_01 says, "...I'm not going to give into it but I am going to have to make life changes... my life is going to have to change." This matches the idea in Text 1 almost verbatim. Therefore, Text 1 is contained within Text 2. | True |
| 64 | '...went for reiki and this and that' | acWL9FBKr3o.txt | therapy after another you know i'd go for reiki and i'd go for this and i go for that | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 15.988324 | 1.114235 | 77758 | 77843 | 0.084993 | 0.669498 | Text 1 is a short phrase mentioning trying reiki and other therapies. In Text 2, the speaker mentions trying various therapies including reiki early in their chronic fatigue recovery journey. Therefore, Text 1 is contained within Text 2 as part of the longer narrative. | True |
| 87 | '...started realizing with diet ... otherwise i was resenting it' | as7I55hY29k.txt | collaboration in my healing because otherwise i was resenting it and i and i just i think those | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 16.123248 | 1.572354 | 113025 | 113120 | 0.077540 | 0.492273 | Text 1 is a short phrase: '...started realizing with diet ... otherwise i was resenting it'. In text 2, there is a part where the speaker talks about diet and resenting it: "so i started realizing with diet and everything else at some point i have to regain my agency and my power... otherwise i was resenting it." This matches the meaning and content of text 1. Therefore, text 1 is contained within text 2. | True |
| 95 | 'holding the emotions ... like a pressure cooker' | as7I55hY29k.txt | emotions it so it becomes kind of like a pressure cooker right like if you have a water | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 16.745424 | 1.174254 | 139002 | 139089 | 0.061995 | 0.649421 | Text 1, "holding the emotions ... like a pressure cooker," is not explicitly contained within Text 2. However, a similar idea is expressed in Text 2 when the speaker describes people with chronic fatigue syndrome (CFS) as "holding the emotions in, like a pressure cooker," relating to the emotional stress contributing to symptoms. So while the exact phrase is not contained, the concept is present in Text 2. | True |
| 48 | 'It humbled me ... changed me ... i wouldn't say i had spirituality before' | ba2LcetNybI.txt | herapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you' | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 17.361370 | 1.467846 | 61530 | 62040 | 0.000000 | 0.637539 | Yes, Text 1 is contained within Text 2. The phrase "It humbled me ... changed me ... i wouldn't say i had spirituality before" appears towards the end of Text 2 during Katie's reflection on how her illness impacted her life and spiritual perspective. | True |
| 74 | '...periodically trauma type symptoms' | acWL9FBKr3o.txt | always understand it would be like trauma type symptoms would come up like i'd feel | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 17.419819 | 2.204477 | 93601 | 93684 | 0.090426 | 0.568137 | Text 1, which contains the phrase '...periodically trauma type symptoms', is mentioned in Text 2. In Text 2, the speaker describes experiencing 'periodically sort of what I would now describe even back then I didn't always understand it would be like trauma type symptoms.' Therefore, Text 1 is indeed contained within Text 2. | True |
| 58 | '...all my friends from home had gone to university ... didn't really have anyone other than family' | acWL9FBKr3o.txt | still at university so initially i didn't really have anyone there other than my family and | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 17.864844 | 1.012109 | 74945 | 75036 | 0.113158 | 0.717519 | Text 1 is a short quote mentioning friends from home gone to university and having only family for company. In Text 2, a much longer interview transcript, the speaker (SPEAKER_00) describes their experience with chronic fatigue starting at university, mentioning friends from home gone to university and initially only having family around. This context aligns closely with Text 1 content. Therefore, Text 1 is contained within Text 2. | True |
| 148 | '...some folks work quickly others more complicated with challenges' | aTvSX_toNL4.txt | rm\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some o | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 17.994995 | 1.307476 | 225540 | 226260 | 0.104859 | 0.397792 | Text 1 is a short fragment mentioning that some people work quickly while others have complications and challenges. Text 2 is a long detailed transcript of an interview discussing recovery from chronic pain through a specific book and therapy methods. The exact phrase or sentence from Text 1 does not appear in Text 2. Therefore, Text 1 is not contained within Text 2. | False |
| 105 | '...committed and made a difference' | aGKbypa8fhI.txt | to learning the program it really made a difference and i could use all these little | SPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i've learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today's interview is an example of just that hi everyone i'm ralan if you're new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i'm super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let's dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn't have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn't have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i've had jason on the channel before that's jason mctiernan's program correct i can thrive yeah i've interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he's a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you're going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i'm by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we're in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you're even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i'm training for a full marathon with some of my friends and before i don't think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it's a horrible thing to go through but thankfully there's a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn't realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that's more of a journey rather than oh i'm stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it's meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you're going through the program if someone's watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you'll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there's online videos that he'll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you're doing great and it's just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he'd give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program's working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there's still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i'm still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that's a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we're going to keep going to keep having symptoms and different things in our lives to let us know what's going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i've got the tools i know what to do i can get past it yeah so for you have anything that you'd want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you'd say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you're feeling even if you haven't found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they're facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he'll always tell you that you got this and it's a journey so can't just keep comparing yourself to where you've been like you're on the right path to recovery\n\nSPEAKER_00: amazing well i'm so so happy for you kelly this is incredible i'm happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it's always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don't want people watching to feel discouraged if their recovery doesn't happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you're interested in learning more about jason mctiernan and his program i can thrive we'll put a video here to help you get a better sense of what that's all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n | 17.997549 | 1.439431 | 162715 | 162799 | 0.082777 | 0.269887 | Text 1 ('...committed and made a difference') is not contained within Text 2. Text 2 is a detailed transcript of an interview discussing recovery from ME/CFS or long COVID, focusing on personal experience and a recovery program, with no mention or repetition of the phrase or content from Text 1. | False |
| 125 | 'anger and anxiety are physiological survival responses ... no control' | aOUUTEeIiS0.txt | you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 18.405290 | 1.484625 | 178127 | 178246 | 0.304225 | 0.768157 | Yes, text 1 is contained within text 2. The concepts of anger and anxiety being physiological survival responses over which we have no control are discussed extensively in text 2 by Dr. David Hanscom, matching the essence of the statement in text 1. | True |
| 80 | '...sexually assaulted and that led to urinary tract infection ... system blacked out ... flu twenty four seven' | as7I55hY29k.txt | totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 18.435386 | 1.015889 | 101972 | 102063 | 0.059299 | 0.463807 | Text 1 is contained within Text 2. The content of Text 1, specifically mentioning a sexual assault leading to a urinary tract infection, system blackout, and constant flu-like symptoms, is described in detail by SPEAKER_00 in Text 2 during her recounting of her health journey and the onset of her condition. | True |
| 71 | 'learning non violent communication...' | acWL9FBKr3o.txt | connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a p | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 18.531248 | 1.004053 | 85890 | 86610 | 0.000000 | 0.463340 | Text 1, 'learning non violent communication...', appears as a phrase within the longer conversation in Text 2, where the speaker mentions learning non violent communication as part of the healing journey and recovery process. Therefore, Text 1 is contained within Text 2. | True |
| 129 | '...can't control it like dragging with handbrakes' | aOUUTEeIiS0.txt | brain is forty that's it so you can't control it and so it's like trying to drag | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 18.830119 | 2.169934 | 198744 | 198824 | 0.114883 | 0.464155 | No, the phrase '...can't control it like dragging with handbrakes' from text 1 is not contained within text 2. | False |
| 84 | '...totally miserable ... taking away anything you enjoy eating' | as7I55hY29k.txt | miserable but we're going to take away anything you enjoy eating which is like one of the few | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 18.893638 | 1.749593 | 110958 | 111051 | 0.100529 | 0.657545 | Yes, text 1 ('...totally miserable ... taking away anything you enjoy eating') is contained within text 2. It appears in a part of the conversation where the speaker talks about the difficulty and misery of restrictive diets during their illness and recovery journey. | True |
| 70 | 'learning to be more myself more authentic' | acWL9FBKr3o.txt | i think a lot of it looked like learning to be more myself more authentic you know learning to express | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 19.179104 | 1.061579 | 86022 | 86124 | 0.240469 | 0.762325 | Text 1, "learning to be more myself more authentic," is a phrase that appears conceptually within Text 2. In Text 2, the speaker discusses the healing journey, emphasizing learning to be more authentic and expressing oneself, which aligns with the sentiment of Text 1. However, the exact phrase from Text 1 does not appear verbatim in Text 2, but its essence and meaning are contained within the narrative of Text 2. | False |
| 5 | 'then i couldn't do anything for myself ... had to lie down because no energy to cook' | bRidO1PiZJs.txt | stage where then i couldn't really do anything for myself you know so once i got back i | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 19.833670 | 1.504278 | 4915 | 5002 | 0.230769 | 0.569458 | Text 1 is not directly contained within Text 2. Text 1 is a short statement about not having the energy to cook and needing to lie down, while Text 2 is a long interview transcript discussing a detailed recovery story from ME/CFS, including a part where the speaker mentions lack of energy to cook and lying down after walking, but the exact wording of Text 1 does not appear verbatim in Text 2. | False |
| 147 | '...therapy helps notice bodily tension often anxiety about anger or rage' | aTvSX_toNL4.txt | more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward of | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 20.651335 | 1.332234 | 226800 | 227520 | 0.137580 | 0.574081 | Text 1 contains a brief phrase about therapy helping to notice bodily tension related to anxiety about anger or rage. Text 2 discusses a detailed conversation about chronic pain, therapy, and emotional factors including anger and rage in therapy context. However, Text 1 as a specific phrase is not directly quoted or contained within Text 2, although the concepts are related. | False |
| 77 | '...nearly twenty years working in this field' | acWL9FBKr3o.txt | and coaching trainings and been working in this field myself nearly twenty years so | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 20.837426 | 1.902392 | 91706 | 91789 | 0.099869 | 0.623913 | Text 1, which mentions "nearly twenty years working in this field," is contained within Text 2. In Text 2, the speaker (Francis) states that she has been working in the field for nearly twenty years, confirming that Text 1 is part of Text 2. | True |
| 103 | '...thought maybe something mentally causing this' | aGKbypa8fhI.txt | pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00 | SPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i've learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today's interview is an example of just that hi everyone i'm ralan if you're new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i'm super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let's dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn't have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn't have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i've had jason on the channel before that's jason mctiernan's program correct i can thrive yeah i've interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he's a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you're going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i'm by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we're in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you're even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i'm training for a full marathon with some of my friends and before i don't think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it's a horrible thing to go through but thankfully there's a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn't realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that's more of a journey rather than oh i'm stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it's meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you're going through the program if someone's watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you'll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there's online videos that he'll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you're doing great and it's just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he'd give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program's working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there's still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i'm still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that's a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we're going to keep going to keep having symptoms and different things in our lives to let us know what's going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i've got the tools i know what to do i can get past it yeah so for you have anything that you'd want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you'd say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you're feeling even if you haven't found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they're facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he'll always tell you that you got this and it's a journey so can't just keep comparing yourself to where you've been like you're on the right path to recovery\n\nSPEAKER_00: amazing well i'm so so happy for you kelly this is incredible i'm happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it's always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don't want people watching to feel discouraged if their recovery doesn't happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you're interested in learning more about jason mctiernan and his program i can thrive we'll put a video here to help you get a better sense of what that's all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n | 20.966133 | 1.106020 | 161082 | 161173 | 0.118265 | 0.616537 | Text 1, which is the phrase "...thought maybe something mentally causing this," is indeed contained within Text 2. It appears as part of the dialogue from SPEAKER_01 discussing their experiences and thoughts about their symptoms and diagnosis. | True |
| 1 | '...always tired constantly tired' | bRidO1PiZJs.txt | eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses bec | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 21.005831 | 1.004053 | 2940 | 3660 | 0.000000 | 0.411187 | Text 1 ('...always tired constantly tired') is a short phrase that appears exactly as part of a longer segment in Text 2 where Irene O'Brien describes her experience with fatigue due to MECFS. Therefore, Text 1 is contained within Text 2. | True |
| 54 | '...had to go through years of research and learning' | ba2LcetNybI.txt | did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00 | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 21.569477 | 1.370703 | 65573 | 65675 | 0.128105 | 0.687960 | Yes, text 1 ('...had to go through years of research and learning') is contained within text 2. It appears in the context of the speaker describing their journey with chronic illness. | True |
| 67 | '...avoiding conflict at all costs' | acWL9FBKr3o.txt | had a massive pattern of like avoiding conflict at all costs like i could not possibly share | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 22.015825 | 2.832847 | 81637 | 81729 | 0.082557 | 0.631166 | None | None |
| 73 | '...felt like connecting with the whole universe' | acWL9FBKr3o.txt | felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 22.151872 | 1.053176 | 89444 | 89554 | 0.117647 | 0.678935 | Text 1, "...felt like connecting with the whole universe," appears verbatim in the middle of Text 2 during the speaker's description of a spiritual experience while recovering from illness. Thus, Text 1 is contained within Text 2. | True |
| 15 | '...when somebody minimizes it you can think no' | bRidO1PiZJs.txt | ou know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportiv | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 22.347093 | 1.004053 | 20790 | 21510 | 0.000000 | 0.384942 | Text 1, the phrase "when somebody minimizes it you can think no," is contained within Text 2. It appears towards the end of the interview conversation where the speaker discusses struggles with others minimizing their condition. | True |
| 52 | '...so nice to see many people getting past these things' | ba2LcetNybI.txt | really are so many people that are getting past these things and i just i don't think we | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 22.427733 | 1.392730 | 63554 | 63642 | 0.134890 | 0.529502 | Text 1, which says '...so nice to see many people getting past these things,' is indeed contained within Text 2. It appears near the end of Text 2 in a context where the speaker expresses appreciation for seeing others recover from illness. | True |
| 55 | 'It was like getting a bachelor’s degree in chronic illness' | ba2LcetNybI.txt | ook years it was like going to getting a bachelor's degree and chronic illness so | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 22.458337 | 1.015408 | 65730 | 65811 | 0.319328 | 0.746334 | Text 1, the phrase "It was like getting a bachelor’s degree in chronic illness," is indeed contained within Text 2. In Text 2, Katie mentions the experience of dealing with her illness as "like going to getting a bachelor's degree in chronic illness," which matches the phrase in Text 1. | True |
| 37 | 'It took a while before chronic fatigue diagnosis...' | ba2LcetNybI.txt | hing was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lo | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 22.600035 | 1.004053 | 43050 | 43770 | 0.000000 | 0.554626 | Yes, Text 1 ('It took a while before chronic fatigue diagnosis...') is contained within Text 2. In Text 2, Katie Gardner discusses her long journey before getting diagnosed with chronic fatigue syndrome, which matches the summary in Text 1. | True |
| 7 | 'part of it was just ignorance be part of it' | bRidO1PiZJs.txt | fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00 | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 22.738970 | 1.555402 | 12447 | 12536 | 0.250729 | 0.672878 | Text 1, which is "part of it was just ignorance be part of it," appears within Text 2. In Text 2, Speaker 01 says: "but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance be part of it." Therefore, Text 1 is indeed contained within Text 2. | True |
| 150 | '...most folks come because they accept this approach' | aTvSX_toNL4.txt | the folks that i work with come to me because they know and understand and accept | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 22.972670 | 2.270979 | 225846 | 225927 | 0.122396 | 0.524343 | None | None |
| 110 | '...saying i am anxious is disempowering ... say i am on my way to getting better' | aGKbypa8fhI.txt | disempowering but instead you could say i am on my way to getting better and that's more of a journey | SPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i've learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today's interview is an example of just that hi everyone i'm ralan if you're new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i'm super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let's dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn't have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn't have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i've had jason on the channel before that's jason mctiernan's program correct i can thrive yeah i've interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he's a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you're going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i'm by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we're in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you're even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i'm training for a full marathon with some of my friends and before i don't think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it's a horrible thing to go through but thankfully there's a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn't realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that's more of a journey rather than oh i'm stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it's meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you're going through the program if someone's watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you'll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there's online videos that he'll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you're doing great and it's just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he'd give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program's working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there's still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i'm still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that's a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we're going to keep going to keep having symptoms and different things in our lives to let us know what's going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i've got the tools i know what to do i can get past it yeah so for you have anything that you'd want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you'd say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you're feeling even if you haven't found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they're facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he'll always tell you that you got this and it's a journey so can't just keep comparing yourself to where you've been like you're on the right path to recovery\n\nSPEAKER_00: amazing well i'm so so happy for you kelly this is incredible i'm happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it's always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don't want people watching to feel discouraged if their recovery doesn't happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you're interested in learning more about jason mctiernan and his program i can thrive we'll put a video here to help you get a better sense of what that's all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n | 23.327385 | 1.153866 | 165269 | 165370 | 0.098143 | 0.755628 | Text 1 contains the phrase "saying i am anxious is disempowering ... say i am on my way to getting better," which is also stated by SPEAKER_01 in Text 2 when discussing the positive affirmations learned from the program. Therefore, Text 1 is contained within Text 2 as part of the larger interview transcript. | True |
| 81 | '...digestive issues ... hot flashes even though young' | as7I55hY29k.txt | of like pre menopausal symptoms even though i was so young so that's kind of | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 23.698560 | 2.108581 | 102460 | 102536 | 0.080214 | 0.524189 | None | None |
| 99 | '...got up and ran around the block like never before' | as7I55hY29k.txt | minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 23.762663 | 1.304113 | 120593 | 120698 | 0.124837 | 0.639152 | Text 1 is contained within Text 2. Near the end of Text 2, the speaker recounts a moment of spontaneous remission where she states, "i actually got up and ran around the block like i had not ran in thirteen years." This corresponds exactly with Text 1's content. | True |
| 131 | '...learn to separate yourself from pain and get on with life' | aOUUTEeIiS0.txt | and so what you're doing is you learn to separate yourself from your pain in the first thing that | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 25.029632 | 1.188098 | 195494 | 195591 | 0.149485 | 0.604438 | Text 1 contains the phrase 'learn to separate yourself from pain and get on with life.' In Text 2, Dr. David Hanscom discusses a similar concept about learning to separate yourself from your pain as part of the healing process for chronic pain. Therefore, the idea expressed in Text 1 is indeed contained within the broader context of Text 2, though not necessarily as an exact quoted phrase. | True |
| 75 | '...go do work with a practitioner or spend night time in nature' | acWL9FBKr3o.txt | to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 25.238516 | 1.816661 | 93764 | 93859 | 0.148528 | 0.698252 | Text 1, which says "...go do work with a practitioner or spend night time in nature," is contained within Text 2. This phrase appears during the discussion of the speaker's healing and self-care practices in Text 2. | True |
| 145 | '...personality characteristics true for me and most clients' | aTvSX_toNL4.txt | part that really resonated the personality characteristics i don't know if you're familiar | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 25.996251 | 1.682182 | 220782 | 220872 | 0.136598 | 0.481588 | Text 1 is a short phrase: '...personality characteristics true for me and most clients.' This phrase appears in Text 2 where the speaker discusses personality characteristics mentioned by John Sarno that resonated with him and his clients. Therefore, Text 1 is contained within Text 2. | True |
| 127 | '...fighting pain reinforces it; you learn to separate yourself from pain' | aOUUTEeIiS0.txt | them and so what you're doing is you learn to separate yourself from your pain in the first thing that | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 26.350570 | 1.001837 | 195489 | 195591 | 0.159898 | 0.615941 | Yes, Text 1 is contained within Text 2. The phrase "...fighting pain reinforces it; you learn to separate yourself from pain" appears in the longer conversation in Text 2, where Dr. Hanscom discusses the concept of not fighting pain as part of the healing process. | True |
| 50 | 'I keep reminding myself these are normal symptoms... fatigue or relapse?' | ba2LcetNybI.txt | it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 26.865270 | 1.125500 | 59486 | 59605 | 0.130548 | 0.554567 | Yes, text 1 is contained within text 2. In text 2, Katie mentions that she keeps reminding herself that the symptoms she experiences during her pregnancy, like fatigue or headaches, are normal symptoms and not necessarily a relapse of her chronic illness. This matches exactly with text 1's statement. | True |
| 76 | '...lots of therapeutic and coaching trainings' | acWL9FBKr3o.txt | know done lots of different kinds of therapeutic and coaching trainings and been working in this field | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 27.005039 | 1.806750 | 91657 | 91759 | 0.112861 | 0.710856 | Text 1 is the phrase '...lots of therapeutic and coaching trainings.' In Text 2, near the end of the conversation, the speaker mentions having done 'lots of different kinds of therapeutic and coaching trainings.' Thus, Text 1 is clearly contained within the broader context of Text 2. | True |
| 143 | '...start doing the work now letting your brain change' | aOUUTEeIiS0.txt | actually the starting point you start doing the work now letting your brain start to change then the fourth | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 27.052703 | 1.512659 | 205648 | 205755 | 0.132296 | 0.721589 | Text 1 ('...start doing the work now letting your brain change') is contained within Text 2. It appears near the end of the longer conversation in Text 2, where the speaker encourages listeners to start working on changing their brain as part of healing from chronic illness. | True |
| 66 | '...had suppressed anger and unresolved trauma in my system' | acWL9FBKr3o.txt | realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 27.505318 | 1.797023 | 81934 | 82050 | 0.144890 | 0.766482 | '...had suppressed anger and unresolved trauma in my system' is a direct quote from Text 2, spoken by the speaker who shares about their experience with chronic fatigue and recovery. | True |
| 86 | '...have to regain my agency and collaboration in healing' | as7I55hY29k.txt | everything else at some point i have to regain my agency and my power and my collaboration in | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 27.697622 | 1.030399 | 112948 | 113041 | 0.139715 | 0.681635 | Text 1 is contained within Text 2. Specifically, in Text 2, the speaker Rebecca mentions the phrase "at some point I have to regain my agency and my power and my collaboration in my healing," which closely matches Text 1's phrase "have to regain my agency and collaboration in healing." This shows that the concept and wording from Text 1 is present within Text 2, albeit embedded in a longer discourse. | True |
| 60 | 'one of the first doctors said she just thought i was depressed' | acWL9FBKr3o.txt | was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 28.206351 | 1.140406 | 75127 | 75252 | 0.350000 | 0.805509 | Yes, text 1 is contained within text 2. The phrase from text 1, "one of the first doctors said she just thought i was depressed," appears verbatim in text 2 during the conversation. | True |
| 132 | '...every chronic disease related to chronic stress' | aOUUTEeIiS0.txt | chronic disease with few exceptions are related to chronic stress that's mental and physical diseases | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 29.075010 | 1.554884 | 179211 | 179312 | 0.125163 | 0.695346 | Text 1, which mentions '...every chronic disease related to chronic stress,' is contained within Text 2. In Text 2, Dr. David Hanscom discusses how chronic stress and threat physiology relate to a wide range of chronic diseases and symptoms, emphasizing that chronic stress breaks down the body and is linked to many chronic illnesses. | True |
| 135 | '...direct relationship between thoughts and suicide attempts' | aOUUTEeIiS0.txt | horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 29.446448 | 1.952178 | 201532 | 201643 | 0.149100 | 0.714637 | Yes, text 1 ('...direct relationship between thoughts and suicide attempts') is contained within text 2. The phrase appears as part of the discussion in text 2 where Dr. Hanscom talks about the link between repetitive thought patterns and suicide attempts. | True |
| 65 | '...flew to america to work with healer' | acWL9FBKr3o.txt | thing and the next thing and i even flew to america i mean i'm in the uk and i flew | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 29.693001 | 2.106425 | 80138 | 80221 | 0.092961 | 0.450936 | None | None |
| 62 | '...perhaps meditation and yoga can help me heal' | acWL9FBKr3o.txt | i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 29.781251 | 1.821422 | 75852 | 75958 | 0.117955 | 0.647595 | Text 1 is a direct quote found within Text 2. Specifically, it appears in the portion where SPEAKER_00 talks about trying meditation and yoga early in her illness, saying, 'perhaps meditation and yoga can help me heal.' Therefore, Text 1 is contained within Text 2. | True |
| 130 | '...hardest part is people can't help but try to fix themselves' | aOUUTEeIiS0.txt | hardest part of this project by far is people can't help but try to fix themselves and when you do that of course | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 30.123729 | 2.386601 | 207329 | 207442 | 0.154242 | 0.775137 | None | None |
| 136 | '...nurture joy if you’re fighting stress not possible' | aOUUTEeIiS0.txt | again you can nurture joy if you're fighting stress not possible you can think you are in trying | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 30.146433 | 2.061597 | 187054 | 187150 | 0.129702 | 0.813849 | None | None |
| 82 | '...so scared ... it was such a death sentence but also a life sentence' | as7I55hY29k.txt | feeling like this was just this death sentence but in a way a life sentence that i | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 30.956628 | 1.274329 | 104599 | 104681 | 0.121920 | 0.617650 | None | None |
| 141 | '...highest thinking brain neocortex doesn’t work in fight or flight' | aOUUTEeIiS0.txt | so what were happening when you're in fight or flight your highest thinking party | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 31.076553 | 1.632715 | 179783 | 179864 | 0.102171 | 0.634869 | None | None |
| 152 | '...mental health and physical health often thought separate' | aTvSX_toNL4.txt | most of us think of our you know mental health and our physical health and those | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 31.965414 | 1.544518 | 234641 | 234721 | 0.128866 | 0.565285 | None | None |
| 11 | 'learning boundaries the hardest for me was learning boundaries' | bRidO1PiZJs.txt | learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 32.120323 | 1.787926 | 17158 | 17262 | 0.350975 | 0.789780 | None | None |
| 137 | '...good food good wine good friends promote healing' | aOUUTEeIiS0.txt | over here because you nurture joy good food good wine good friends your brain develops that direction | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 32.800294 | 2.699481 | 205857 | 205958 | 0.119636 | 0.535222 | None | None |
| 63 | '...felt different after doing alternate nostril breathing' | acWL9FBKr3o.txt | instance i remember one time doing the alternate nostril breathing and noticing i felt different | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 33.675351 | 1.637098 | 76034 | 76130 | 0.108387 | 0.792578 | None | None |
| 91 | '...brain generates pain fatigue because it senses danger' | as7I55hY29k.txt | and it generates pain as well as fatigue because it senses danger but that danger can be psychological | SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she's in san diego so we're both in california which made scheduling this incredibly easy so grateful that she's joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she's got a lot of really great stuff to share so i'm really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it's such a pleasure ray lynn i've watched your channel recently and i'm just so touched by the heart you put into it it's really clear that you're just here to support people and just offer all the different ways that helped you and helped others recover so i'm happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it's really it's all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let's get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn't able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn't feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn't sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn't remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that's kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i'm sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn't in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn't really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn't go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can't go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he's you know he's natural he's going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don't know what the causes and we there is no cure and really you're going to have to live with this i mean that's all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don't think so i mean it wasn't something that i didn't know anyone that had c f s maybe distantly i had heard of it but i really didn't know much about it and of course the diagnosis chronic fatigue syndrome sounds like you're just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn't even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn't really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn't even eating you know carrots or any grains or anything like that which really wasn't a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren't making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn't shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there's every kind of sleep expert and that was still a really vexing symptom when i wouldn't sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn't he couldn't really understand why i couldn't do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn't really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you're hit with i'm so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we're just sort of this body that is trying to get better but at times i fell into some depression i'm lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what's the point of living at all i mean on doing is taking these supplements like eating foods i don't even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn't doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don't have a cure there was something in me that was like but this isn't me like this isn't my life this is not how it's going to go i know that there's something that can get well there's something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i'm just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we're going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn't drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn't feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn't really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i'm going to tell you to take a bunch more supplements and more restrictive diets and i suspect that's actually perpetuating the trauma in which you felt you were in control of your body and now you're just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn't even know that's how i felt but i think for those of us even if there isn't a trauma what i find with other people i meet who have c f s is often if not always there's a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn't work partly because of that and partly because the root cause of my c f s was not that i wasn't eating enough kale right that wasn't the cause or that i wasn't taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn't really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can't have gluten i can't have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn't sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that's what i found too and so i think especially if you're being asked to eat in a way that just doesn't feel right to your body for whatever reason not that there is one right or wrong diet but for you there's going to be resentment you're right you're going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let's see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn't do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn't sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn't read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn't that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i'll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don't think we should talk about this let's talk about my cat which i'm dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i'm thinking this woman who's not even listening to me who's shutting me down is going to heal me and it's just not going to happen not to say i didn't think i needed help from people or that we don't need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there's some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it's hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn't something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn't actually shift the physical symptoms but i sort of was it's not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn't fighting it and so i feel like from that place i really wasn't pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn't work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don't want people to think oh that doesn't happen to me it can't happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn't overcome and so to me i felt like that's this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you're not sick you know and i think she kind of alluded you're just you're stressed you've been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn't even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that's a really good point because i think for me what the key was even though this woman wasn't a therapist she wasn't a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she's not a medical professional but i felt like i can overcome this because it's now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i'm not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn't do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that's all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you're talking about food and for years i couldn't eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let's try to have a little bit more oh i feel okay and now i can eat copious amounts and i'm fine and i just assumed okay my body must have healed it but now i'm thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i'm ok a little bit i'm okay brought up and socialized not to attribute attribute our physical symptoms to something that's being caused by the brain like we don't even see the connection at all like there's a wall here where this stuff starts where this stuff starts and it's just exactly to see that that's\n\nSPEAKER_00: not the case so fascinating well exactly and you know what's so interesting we're raised like you say to see like a physical symptom has to have a physical cause but now there's actually a whole body of neuroscience and scientific research showing that there's just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it's the same part of the brain that perceives it and so what's so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it's like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you'll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren't like particularly discriminating they're just sort of picking up information in our environment and if we're stressed or in our nervous system hypervigilant they can mistake that like rice isn't good for me or whatever we're told by our doctors isn't good but this dr schupner actually led me to believe and it became true that i could eat all these foods it's just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i'm not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you're describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn't an innate food allergy it's an association or a condition response it's like pavlov's dog right it's the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that's an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it's not that it doesn't exist you know our brain is a very real part of our body it's another organ that we have so it is creating conditions in our body it is something that is real it's just not maybe caused by the organ that we think is causing it it's originating from a different place in the body\n\nSPEAKER_00: yeah i'm so glad you said that because i know like all of us who have dealt with cfs we've been told like you're making this up or we've been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i've mentioned dr sarno and dr schubiner whose work really helped me they're very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they'll go into flight fight or freeze mode to protect you so either to help you to run or fight and you're flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it's creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i'm sure was higher because my brain and nervous system weren't functioning optimally and so when you're prepared to run or fight your digestion is not a priority your hormones aren't a priority all these other things are not working as well that's true the immune system isn't a priority but what i found for me is that wasn't the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i'm being told i'm just emotional or depressed it's not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we're safe or not safe whether to trigger the flight fight freeze response right if there's fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn't ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it's like where's the heart and the humanity much less the neuroscience and i don't mean to blame or implicate i know everybody's doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there's so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn't serious and i just i don't know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i'm really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno's work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno's book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn't see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i'm ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it's the same thing because if you think of fatigue there's a part of you that doesn't feel safe and it's sort of like your system's trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we're not aware of them but i think that for me there was this perception like the world's not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we're dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven't done the curable app because i already recovered through some of the other books and through coaching but it's it's really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i'm really glad curable i'm told by some of my clients now has somatic tracking meditations on there but basically you don't even need a meditation but it's helpful to be guided where you're just kind of tracking sensations in your body so it's like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you're getting these messages of safety like i'm safe and ok there's actually nothing wrong with my body so you're kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that's also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there's different podcasts on this approach curable has one there's others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i'm going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i'm doing it the symptoms are rising i'm getting that malaise and i would just be like reiterate like you know i'm ok i got this i i know what's going on and that's like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn't take a lot of time this approach it's kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that's not good for you but then within usually a few times i could just eat it ok it's crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i'll say i was really ready i would have been able to just jump into this years before when for one i didn't really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it's not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it's like how am i feeling emotionally and i would acknowledge i'm scared i'm really scared i'm really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that's really hard you know just talk to myself i'm so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it's been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it's just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i'm failing what's wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we'll pick it back up when when it's time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno's books and there's one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you're doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we're and also and not just that with myself with a lot of people i meet it's like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we're holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that's boiling with the lid on eventually it's going to burst because we're holding in all the pressures i remember i know i keep bringing him up but he's such a kind man and i think he's really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they're really nice people like i get to work with the nicest people right because it's not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i'll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn't mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i'm too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can't be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i'll notice if i'm pushing too hard like if i'm feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i'm always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i'm aware of it usually the symptoms subside or sometimes i'll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don't think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn't really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it's like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn't just unkind to myself like it's actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you're talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we're so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff's work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he's just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i'm not angry i don't have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we're very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it's just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it's just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he's just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i'm really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we're talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i'm going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i'm not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what's going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it's been wow three years now feel really grateful i'm at this point where i know there's so many years where it's i would never want to go through it again honestly and i wouldn't want anyone to have to it's so hard but i am at this point where it's like i'm grateful for the ways i've grown that i don't know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there's just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it's at some point that's really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i've interviewed recovered something similar they're just a better place than they were before and they've learned so much such a weird thing like i used to my own journey i'm like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it's just such a crazy thing to think i don't think i would just mind blowing and i'm sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that's like a really form of going to the acceptance and healing to get to that point where it's like how i would take it away i'm grateful for what i've learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there's a lot of things we don't understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn't their fault because i was also kind of giving them that power but realize like wow there's so much resilience inside and for me i've learned nothing's going to work unless i intuitively feel right about it like if i'm doing something as a means to an end whether it's about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn't necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i'm not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she's like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i'd have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it's a quality stabilize i think now things for me like maybe there's a little less of being able to do things but there's definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren't that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i'm still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it's not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it's a good it's an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it's fully behind me it's really amazing because i know for so many of us for all those years if you like you're never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i've ever done by far it really is amazing sometimes you kind of question it but i think that's a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she's got like such certainty that's that's amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it's all kind of in stages right yeah it's all stages and then you get to the point where you feel it's behind you and you've recovered but yet you have all these things you've learned and that you still integrate\n\nSPEAKER_01: it's a good place to be and that's why i just did that video because i didn't do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it's interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i'm not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it's so two hundred and forty seven now and it's a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it's also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it's just when there's things that don't seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it's been really fun to be kind of in community with people so that's what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it's like ok either need to get another job because i'm off disability or really make this my vocation i just decided i wanted to do this full time so it's been interesting growing my own business but it's really it's from my heart and i really love it it's amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that's just incredible i don't have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that's why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it's just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i'm just so grateful for you and the work that you do and that you're out there providing this kind of support\n\nSPEAKER_00: thank you rayland i'm so grateful to you honestly i'm so touched by looking at how much you give out how much you put out to do this just to support the community it's clear that your heart is so in it and you just really want to help people and i know that you're a lifeline for a lot of people so thank you\n\nSPEAKER_01: it's really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it's just this is just\n\nSPEAKER_01: the most selfish thing i've ever done because i get so much out of it it's really rewarding so it's a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it's really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there's a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they're not talking about chronic fatigue much less mecfs which we know is not just fatigue so that's really the best way i'm also on facebook but i'm just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you'll find all of that there i highly encourage you to check it out and rebecca you've mentioned a lot of really great resources and books and so forth so we'll make sure to have a full list of all of those things linked below as well so if you're interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i've got a whole playlist of full recovery stories just like this one i'll link it up here it's just really moving really inspiring stuff and i learned something from every single one so i think yeah i'm just so grateful to people like yourself i'm grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it's so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you're going through it's just it's so moving so i'm just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let's keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you're facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you're a superstar\n\nSPEAKER_01: that's it for today thanks for watching and i'll see you in the next video\n | 34.901170 | 1.035949 | 125393 | 125495 | 0.139896 | 0.747785 | None | None |
| 49 | '...illness catapults our growth and puts us in a better direction' | ba2LcetNybI.txt | really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 35.189284 | 1.038752 | 62382 | 62500 | 0.161125 | 0.637835 | None | None |
| 33 | 'It's like being like when you watch a six year old wandering...' | ba2LcetNybI.txt | eah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 36.099634 | 1.004053 | 39690 | 40410 | 0.000000 | 0.355455 | None | None |
| 154 | '...strategies to ward off dangerous emotions turned into physical pain' | aTvSX_toNL4.txt | our environment and we develop strategies to ward off these uncomfortable or dangerous | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 36.184359 | 1.963395 | 224156 | 224242 | 0.164975 | 0.449290 | None | None |
| 155 | '...chronic pain brains light up amygdala responsible for anger and rage' | aTvSX_toNL4.txt | ut someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your | SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i've conducted so far if you've listened to even a few you can probably guess what book that is it's become such a phenomenon that there's even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you're new here welcome i'm raylan and don't worry in this video we're going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn't just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn't sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn't need it causes problems for me now but yeah so everything went away i didn't do much with it as a practitioner i'm a counselor but i didn't do chronic pain counseling in fact we didn't talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn't do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn't enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can't do this back hurting it's clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don't want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn't my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i'll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who's a psychologist who works in the department of neurology he opened me up to the whole world of what we'll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there's no chemical activity in the brain indicating any seizures and they're what's called psychogenic seizures and they use the same emotion focused approach i'll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what's called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i'm still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn't sit down i couldn't move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn't get up for i don't know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that's all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there's quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don't that doesn't cause pain just like gray hair doesn't hurt it's a psychological problem there's quite a bit of evidence now indicating there's really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don't have\n\nSPEAKER_00: yeah it's interesting our understanding of chronic pain now because we used to think not so long ago well if there's no structural damage maybe this is a psychogenic thing but now we're seeing that there's very little correlation between the level of structural damage and the pain that you're experiencing or that the pain being an indication of a level of structural damage they just really aren't\n\nSPEAKER_01: radiologists can't tell from looking at images who has pain which should be pretty clear cut but it's not\n\nSPEAKER_00: so when you read dr john sarno's book what was it from the book that was resonating for you and making you think okay this might be what's happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don't know if you're familiar with some of the things sorrow talked about but they're they're so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we're the people that run around trying to make everyone feel better we don't like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we're really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won't have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn't a structural problem there's nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn't one of them and a number of us the people that i see usually are you know they have read it they're familiar with it that's why they find me but they're still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we're born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it's just a beautiful depiction of really good parents and teach a kid that where's my happy girl and you can't be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we're able to transform this physical or these emotions into physical form there's actually quite a bit of mri research that supports this process which is really quite amazing that we're sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they'll put someone in an mri kind of apply heat to their finger in a way that doesn't hurt the finger but hurts a lot you see the brain lights up there's not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you're not familiar it's part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn't even need kind of whisper this in the shadows what's your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it's it's and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we're able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it's more complicated and it's harder i was one of the people that's more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i'll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it's not a big deal\n\nSPEAKER_01: in istdp we're always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn't lie brain will lie they'll say i'm angry i'm so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you'll see tension\n\nSPEAKER_01: right what do you notice my stomach's tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that's anxiety they don't know they're anxious subconscious what they're anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they're not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it's it's really quite funny to watch when i run through someone get activated you'll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people's emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that's a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can't remember what you said that's that's a defense and so we'll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can't short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that's very different it's a looseness it's it's a warmth it wants to move and push up and out of the person we'll see them sign\n\nSPEAKER_01: that's an activation we'll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that's a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we'll ask them they'll have visions you know quick images i have this picture person sometimes it's not even a person start to talk about it quickly go to primary caregivers people who use them it's called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn't happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn't get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn't know much about it at the time this is going back about ten years but i had read some of schumer and lumbley's work that they had effectively so i started using it with them with an understanding to say hey you're the first people i've seen with this i can't really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it's the only thing that i've learned that really can cure it at least you know keep in mind the people i see have been through everything else i'm never the first stop usually the last so you know they'll come with all these other things that they've done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn't know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that's been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it's it's really been incredible to watch the change in fact right after this i'm going to switch to another zoom meeting and i'm training doctors here in our local hospital on this as part of a community of us that's been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there's a growing recognition even in medical school now they're starting to get some there was no pain curriculum medical school and they're starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn't work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it's going to be a really painful thing to endure but yet they're still struggling with their health what do you think what do you think's happening there\n\nSPEAKER_01: yeah that's that's a good question dealing with emotions is never easy it is some of the hardest work that we'll ever do istdp is incredibly difficult approach it's incredibly supportive of people but it's different and i do liken it to you know some different therapies that people go to that they found helpful but don't cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it's great for your health right everybody should go for a walk and walk a lot and it's easy and it doesn't cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that's what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we're working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won't see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that's the goal with istp so we do look to take people you know a little bit further every time without going too far that's difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you're going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn't to make myself get better that wasn't my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it's it's such a change in mindset and our understanding of what's happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn't i find this my answer is always the same you find this when the time's right and not everyone's ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it's not the right time for them and we'll decide together that it's not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that's the time that's the make or break time people who really believe in it and know that a setback is part of the progress we'll stick with it and work through it and get better and people that aren't so sure about this will say well this is just bringing up all kinds of stuff you know i'm already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn't the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it's so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it's not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you're welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i'm curious from the viewers what questions you have love to see it and what's your experience been with all of this what's your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you're not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you're not able to capture them all so there's a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n | 36.489779 | 1.443321 | 224910 | 225630 | 0.152866 | 0.620909 | None | None |
| 139 | '...lack of sleep causes chronic back pain not the way around' | aOUUTEeIiS0.txt | sleep actually causes chronicle back pain not the way around sure goes interesting so hard | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 36.935093 | 2.041614 | 177104 | 177194 | 0.146718 | 0.715749 | None | None |
| 126 | '...pain circuits absolutely permanent like phantom limb pain' | aOUUTEeIiS0.txt | cannot these pain circuits are absolutely permanent is similar to phantom limb pain | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 37.069848 | 1.466058 | 194632 | 194715 | 0.141388 | 0.858721 | None | None |
| 140 | '...half a million times stronger than conscious brain' | aOUUTEeIiS0.txt | physiological response is about you know half a million times stronger than your conscious brain so your conscious | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 37.551387 | 1.861541 | 179461 | 179575 | 0.132812 | 0.633663 | None | None |
| 134 | '...separate from the thoughts that's where behavior therapy comes into play' | aOUUTEeIiS0.txt | solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 39.915313 | 1.038559 | 202384 | 202492 | 0.181589 | 0.573814 | None | None |
| 79 | '...illness in one person might be a wider family system issue' | acWL9FBKr3o.txt | our wider family system and how an illness in one person might not be the root of that problem | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 40.204949 | 2.050146 | 97105 | 97199 | 0.152062 | 0.795240 | None | None |
| 133 | '...anxiety depression bipolar ocd schizophrenia are metabolic inflammatory disorders' | aOUUTEeIiS0.txt | cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of i | SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it's just the sensations generated by your body when you're in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i'm seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you're about to hear one of the most eye opening and information packed conversations in the chronic illness space today we're diving into what's actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it's not all in your head which we always knew it is deeply wired into your nervous system through something we'll be exploring right now called threat physiology if you're new here i'm raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i'm thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you're stuck in fear loops if your body feels like it's always on high alert or if you're just exhausted from being told that there's nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let's dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i'm excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can't wait to get into all of this i'm sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what's your experience been leading up to today\n\nSPEAKER_01: well i'll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn't didn't even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn't know what it was and you know it's basically just regulated nervous system it's an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn't till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn't know what else to do and inadvertently as you're not certain turned out sort of to be the answer because we're eventually learned that with the brain be so neuroplastic whatever you're fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i've been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he's to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren't working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn't know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn't have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon's approach to non operative care surgeons if you address sleep is number one people weren't sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it's just the sensations generated by your body when you're in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can't solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there's a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there's inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it's been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you're in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that's mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn't begin to imagine\n\nSPEAKER_01: forty so what were happening when you're in fight or flight your highest thinking party or brain the neocortex doesn't work so when you're running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you're just reacting you're not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it's a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you're in all this pain you're you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i'm wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i'm watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn't solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that's very self directed and i don't think as you go too much in the details of the course now because the idea is it's about learning skills so what's evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it's really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body's in constant fight or flight your body's going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that's a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we're focused on structure and so the problem is we're just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you've all these symptoms we kind of we can't find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it's going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that's wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body's bath in this chemical environment you know different organ systems have different functions so i migraine headaches they're gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it's gone is a renda symptom sounds sort of mild but the chronic really bothers you it's gone and the reason for that again i can theorize on it but it's gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that's gone skin rashes would pop up over my body that's gone and back pain neck pain that's gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he's living the best life of his entire life that's after twenty eight surgery there's two parts to healing one of them is to learn to your survival physiology is keeping you alive it's a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don't feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that's one part of it the other half is nurturing joy so again you can nurture joy if you're fighting stress not possible you can think you are in trying to distract yourself but it's such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you're on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it's a bit more complicated that but not much and i'll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there's ways of process your stresses differently so they have less impact on your nervous system there's ways of making nervous system going from hyper reactive to call and there is a physiology there's things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it's never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you're my office and you have chronic pain as you look when you walk in the office you'll never discuss your pain ever with anybody and because what's as input was input doing your physiology right so it is a bit deeper than there is just your physiology i'm sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what's it doing to your physiology right so that's one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it's for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you're in pain you are complaining about the doctors medical system there's illnesses you complain about when you're in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i'm sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there's some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can't talk to it you said to teach it how to feel safe so that's where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we're treating only the symptoms so the root causes and we close being address so it's like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you've got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that's it we try to really really learn about pain or really solve the problem you're actually reinforcing the pain here's learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that's whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you've covered everything that i've been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you've explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn't know what else to do and i wasn't going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn't the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you're talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i'm really struggling to believe that i'm going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let's take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there's a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don't stay alive you know when across the street we know we're not looking to the sun we know how to stay safe but your brain's taking it in if mission every second so which is really information it just ignores it because it's safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can't fight them and so what you're doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you're here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that's the solution it's really is so from neuroplasticity standpoint by the way neuroplasticity i'm sure knows it we do not i didn't know this medical school i'm sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you're doing you're trying to direct the brain to change the direction she want and that's why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don't bother anymore so it's consistent one example right now again i don't know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they're not psychological so in zari is the term we use when you're fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don't like to embrace it but you do embrace it because it's part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don't heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn't work so what you're doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don't have thoughts they don't have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don't have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that's it so you can't control it and so it's like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that's what's going to happen your conscious brain is respond to what you put into it so it's a forty bits of information per second eleven million you decide what you want to load into this thing if you're put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i'm really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it's the actually physiology first so it's about a one to ten second delay your body automatically reacted by the time you think about it so let's have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don't have that but just by definition the way the brain works and this is where i think humanity's going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you're the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you're buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you're anxious frustrated for any reason you're from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that's very unique to humans so we're through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people's pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they're gone but i could figure out why and so you have to understand is that there's a four part process when these thoughts so the miracle i just start with is that of a hornet's nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we're doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that's where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you're here in common physiology is a stylish healing model we change the input the nervous system the output and what you're doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we're overwhelmed or frustrated we feel trapped and when you're angry your nervous system is really fired up so there's a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we're not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it's just feel bad so we develop this story about ourselves to feel better about ourselves second of all we're mostly programmed by negativity right\n\nSPEAKER_01: we're raised by criticism do this do this should do this shouldn't do that so we're sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we're competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what's called mental rigidity which is cemented in my anger is this really fixed view of yourself it's not solvable that's where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it's not so it's not changeable so that's the challenge we deal with now is if you're open to actually engaging people heal but the key issue is people don't believe it you mentioned earlier well what if you talk about this people don't buy into it well it's a problem so i ask people don't believe me so when you leave this podcast or tv show don't believe anything i said the key is connect to what's in there which is skepticism so i said you don't have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that's the definitive healing it's not by fixing the negative side it's by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don't need it you understand your three physiologies over here you're not taking it personally you don't need an ego it's a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn't spend time with so you know she just gets what she wants anyway so she doesn't need an ego\n\nSPEAKER_00: so that goes so i'm thinking about the people listening watching and i think there's a tendency for people to think i'm somehow going to be the one person that this doesn't apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i'll tell you that i don't know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can't help but try to fix themselves and when you do that of course your attention's on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don't want to become a professional oh really i mean you basically become a professional at life skills so we're not being the highest level professional learn how to rig your physiology so i'll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i'm learning i mean it's really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i'm on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he's a friend of a friend now i'm not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who's like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we're supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn't know any of those clear back forty years ago you don't operate on people that are suicidally depressed you just don't do that well that's being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i'm working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he's not suicidal the pain is still there but he doesn't react so much which is always the first thing with pain that is there doesn't bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don't have pain so people do go to pain free and it's better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i'm going to try anyway there's a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that's probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i'm just thinking this is a lot of information for people watching listening so if you're feeling like i think maybe i retained ten percent of that don't worry watch it again i'm already thinking i'm going to have to go back and replay this and i'm wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there's a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it's a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that's it it shouldn't be work should be curiosity what's going on look at it as just learning skills it's very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you're going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he's got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i'm also going to link if you're watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i'll link that up on the screen as well if people want to check that out it's just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he's my mentor oh and we play golf together we stay each other's houses and stuff so he's wonderful he's very academic he keeps doing the research on it and he's really really wonderful\n\nSPEAKER_00: yeah he i've only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people's lives it's it's incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n | 40.306578 | 1.290569 | 178920 | 179640 | 0.202247 | 0.502692 | None | None |
| 45 | '...up in middle of night every night and eat sugar' | ba2LcetNybI.txt | middle of the night every single night and eat sugar like there was something happening | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 40.684252 | 1.032781 | 52093 | 52180 | 0.123037 | 0.803126 | None | None |
| 69 | '...impact of trauma on my system manifesting physically like a freeze response' | acWL9FBKr3o.txt | think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 41.184489 | 2.503260 | 82839 | 82980 | 0.190955 | 0.777810 | None | None |
| 32 | '...i have to catch myself and be like you are a walking miracle like this is incredible' | ba2LcetNybI.txt | bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that | SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i'll let her go into details of that but i'm just really excited to have you here welcome katie thank you for having me i'm so excited to meet with you and to be here i am really excited to hear more about your story and i'm so grateful and beyond impressed that you are willing and able to do this right now because i hope you don't mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you're a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i'm excited that's the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don't even know because i couldn't even picture my future before i think it was too hard to dream or hope and now it's like who knows what will happen it's just amazing if i'm having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that's stressing you out does not matter it does not matter yeah absolutely and it's it's funny that's one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it's like every day it's like you're winning the race every day you're like yes\n\nSPEAKER_00: it's like being like when you watch a six year old wandering through the world and they're just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn't go away yeah i don't think i don't think it will but it's something i do think about often\n\nSPEAKER_00: i think i'll appreciate this it is hard though to have friends who've never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it's hard for me to be their friend now because i'm like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that's one of my things that i really miss so when i can see people who could and just did it of course i don't know their life and i don't know what they're facing and they've got their own reasons and limitations i have no clue what's going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i'm like that's all i want to be able to do like i was my life and my identity but yeah you're right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i'm not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we're just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it's because it's relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn't treat it it's believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn't until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn't walk i just wasn't recovering sleep so i would be working for about every i don't know two to four months and then i would end up collapsing and i just couldn't recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that's when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don't think they really what to do they looked at just blood work ology it just really i wasn't really getting care for it for many years yeah unfortunately such a common story i'm sure you've seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that's where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn't fight and that was the missing link why couldn't my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that's what brought me to my other doctor who's an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it's like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn't producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master's degree which you know is a lot it's a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don't even know how i didn't look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i'm sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn't at all like my childhood experience it's completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i'd been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i'm warning signs i wasn't necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i'm sure it's not everybody but i imagine you've noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we're always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn't safe i didn't feel safe riding the subway home because i thought i'd fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that's really important because i can't get my cells oxygen if i'm not so i know movement is a very hot topic and it is very controversial because it's not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i'm curious what diet changes ended up helping for you not because i think necessarily it's the key for anyone else but i think it's good for people to see that there are different paths to health through diet for people and it is very much individual so i'm curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don't know if that's\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don't know if i'm familiar with nightshades but i did have a problem with those for a while nightshades that's things like what is that is that tomatoes and bell peppers or what is yes it's tomato potatoes eggplant the one i can't take i can't tolerate anymore i can't see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it's kind of scary at first you're like what am i going to have left but eggs were bothering me for a while they don't bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that's encouraging that you didn't have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it's very hard to do i did it as a last resort after years of suffering it wasn't my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it's just hard to meal plan hard to it's a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you're so desperate you just need you'll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn't getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn't want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can't i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it's really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it's very it's very hard to fight fight that but once i got broke through you're right i didn't feel those cravings the same way and doesn't it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it's just incredible to have this healthy relationship with food where it's not a battle and you're not trying to force yourself to eat the right things okay so i just want to make sure i'm catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there's something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it's good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i'm talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you're right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it's confusing because we're trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it's just don't move but i found i couldn't rest my way out of this i couldn't just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn't get me anywhere i agree i did the same thing so it's great there are so many things that did work for you were there some things that you tried that didn't work for you and what were they\n\nSPEAKER_00: that doesn't work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i'm on and i'm going to real honest the supplements i take are based on my blood work and my genetic profile they're not necessarily applicable to else it doesn't\n\nSPEAKER_00: and i don't think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there's going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it's one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it's just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it's not a regular person caffeine crash with cfs it seems to be amplified it's just\n\nSPEAKER_00: yeah and it's a good point about the symptoms too i think we're all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it's a balance you do have to treat some of them you know like for me i wasn't sleeping and i did all the things under the sun that you're supposed to do and it just wasn't working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i'm not against that but i'm talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it's it's really hard i can't break any of it most of it down there wasn't specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don't have any children so i don't have anything to offer on this but i'm curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i'd be pregnant i would have thought that that's crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn't want to be a burden more of a burden to my husband i didn't want the financial responsibility i didn't think i could be a good mom i didn't want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what's next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn't want to live in fear\n\nSPEAKER_00: because there's not a lot of research out there doctors couldn't make any promises to me\n\nSPEAKER_00: you'll be fine and i'm like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it's triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it's normal to have headaches when you're pregnant it's normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it's reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it's been definitely an interesting experience yeah i can only imagine it's something that i experience even not being pregnant i imagine it's something we all experience to a certain extent we're just a bit i don't want to say paranoid but we've been through a lot so it's natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it's a constant reminder i have to have for myself that getting better doesn't mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband's coworkers have gestate had gestation like but it's so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it's it's natural i think anyone's going to and i would hope and i would imagine that as time passes we'll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you've been through i always love knowing you know how this has changed you how it's impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn't say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you're spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i'm thankful for that appreciate life more i don't know quite how to put this but it's a bit of a conflicted relationship isn't it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it's something that is so horrible and so horrendous and you wouldn't wish on anybody but at the same time it's hard to imagine your life what it would be like if it hadn't gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i'm set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i'm here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it's happening either way there's no taking it away there's no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you've definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it's exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don't think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there's so much reason to be hopeful and i love that there's more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn't find any this was twelve years ago or something i didn't hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it's crazy we're just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it's just really nice it's really nice to see so if you could go back in time to when this first all happened i'm curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don't know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn't want to believe that part of me rejected it but you can't unhear it so it messed with my mind and if i know no that's not true you can't limit a person's potential you don't know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it's like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn't just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor's degree and chronic illness so i don't know if there's\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i've never heard that before like getting a bachelor's degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that's it's the really the biggest part of the fuel because this is such a marathon it really is it's really hard it's exhausting it's a lot of work it's boring it's lonely it's stressful it's depressing and if you don't even know that it's actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don't even know if it's possible most really bad days or weeks or months it's really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don't know you know what everyone's prognosis is and we don't know what everyone's journey is going to be so you obviously can't say for certain what's going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i've had goosebumps you brought me to tears it's just really wonderful how far you've come and it's so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it's my pleasure i love it i love what you're doing i'm so happy i got to meet liz and i've gotten to meet oh my goodness so many people it's i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it's just so i think about somebody i can picture somebody and they're bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it's funny i don't i don't know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can't wrap their head around someone could feel because they've been told so many times\n\nSPEAKER_00: and i'm like that's why the more pictures we can show them of people so it's not just me saying it a whole group of people stepping forward that it's like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i'm not sure you ever really had it or you probably clearly you weren't all that sick or that doesn't actually work for chronic fatigue syndrome because no one can get better from that or most people aren't like that most people you know are there's a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can't wrap their head around it no this can't be you're not like me we're not the same that's not possible i don't know what's happening there but that's not it so i try not to be like defensive i'm like whatever i know my life like i don't have anything to prove that's such a good attitude to have and that's such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i'm on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it's called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i'll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we'd love to hear your thoughts we'd love to hear from you if you have any questions for katie i'm sure she'd be happy to answer them so yeah so please leave your thoughts leave your comments below we'd really love to hear from you and if you enjoyed this video if you think it's helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let's get these stories out there let's keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i'm sure could use a little inspiration sent their way so if we're not already friends on instagram please come find katie come find myself we'd love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that's going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven't already subscribed make sure to do so because you're not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n | 41.761094 | 1.723586 | 39401 | 39549 | 0.211706 | 0.733745 | None | None |
| 9 | '...contacted jason and went onto his program because it actually really made sense' | bRidO1PiZJs.txt | ck sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 42.313477 | 1.004053 | 9660 | 10380 | 0.000000 | 0.599059 | None | None |
| 61 | 'i knew it wasn't just depression i knew there was emotion about feeling unwell' | acWL9FBKr3o.txt | as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i don't know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i've never had it done i didn't go for it but it was so in a way it was kind of funny that i hadn't even booked in for this session but i didn't think i had i thought i'd booked in to see a nutritional therapist again because my dad had told me that she'd helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you've never tried it you haven't lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you're anyways it's the stuff that we all tried well it's just it's yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it's about these days but back then i remember reading an article about how cold can help me and i'd lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it's quite funny\n\nSPEAKER_01: i know you think about it we're going through this incredible suffering we have all these scary symptoms and then we're getting hoses put up our bums and laying in breathing full bath tubs it's like as if the suffering isn't enough we just kind of just desperate like okay if it even works for one person i gotta try it it's amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i'm in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it's fascinating how the body creates all these symptoms as a new distraction or is it because it's being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn't trusting me and but i think it was just triggering some old stuff as well and then like i couldn't handle the anger so i remember just being like can't feel this i don't know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it's because i've done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 42.764004 | 1.771611 | 74157 | 74297 | 0.410526 | 0.801027 | None | None |
| 13 | '...now i make myself every day lay down and take a nap or do some meditation' | bRidO1PiZJs.txt | that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not g | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 46.605480 | 1.004053 | 17430 | 18150 | 0.000000 | 0.543023 | None | None |
| 0 | '...the minute i stood up i just couldn't do anything i just drained of energy completely' | bRidO1PiZJs.txt | don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they u | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 49.470218 | 1.004053 | 2100 | 2820 | 0.000000 | 0.616997 | None | None |
| 19 | 'i can stop myself before i actually get to the stage where i'm really pushing boundaries' | bRidO1PiZJs.txt | ve overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 50.545366 | 1.295303 | 14642 | 14780 | 0.453608 | 0.765504 | None | None |
| 10 | 'if my phone rings i let it go to voicemail so i can deal with it when i want to' | bRidO1PiZJs.txt | where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to | SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can\n\nSPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's\n\nSPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know\n\nSPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate\n\nSPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back\n\nSPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that\n\nSPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it's still something that i'm working on\n\nSPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don't need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place\n\nSPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn't say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand\n\nSPEAKER_01: why are you even pretending to try and understand when you're not even you're not\n\nSPEAKER_01: you know and that's something i struggle with but i'll get\n\nSPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what's wrong with you\n\nSPEAKER_01: but yeah i'm not used to being to flaring up with things\n\nSPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just\n\nSPEAKER_00: i don't think we're ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn't matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n | 54.942249 | 1.312538 | 16380 | 16680 | 0.417989 | 0.704407 | None | None |
| 56 | '...felt a bit fluy felt a bit strange felt a bit scared because it felt really weird' | acWL9FBKr3o.txt | didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start | SPEAKER_01: hey guys if you're struggling with the overwhelming challenges of chronic fatigue please know that you're not alone and what's even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i'm raylan if you're new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we've learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i'm excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let's dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn't feel well at all didn't know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn't last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn't get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn't just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i've grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn't know what was happening i didn't know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn't really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it's i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn't for most of us the first thing takeaway pitch that was ability to function in the world and anyone's going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i'd notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i'd feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn't work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that's going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it's not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn't seem to do anything for me at that point but maybe it just wasn't the right thing at that point you know but later on i do think acupuncture did help a little bit i'm not quite anything against chinese medicine or acupuncture but it was yeah that didn't didn't particularly do anything in those early stages i'm trying to remember i mean i would at some point i started like trying one therapy after another you know i'd go for reiki and i'd go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn't even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn't that helpful i don't think yeah i 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nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn't realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn't realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they're very similar i can't remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that's what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i've done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don't know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i'd go a little bit like a bit fatigue again and then i'd have to kind of work on something and then i'd feel back to normal again so it was yeah for me a lot of it when i look back i think was what's to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it's definitely a theme i couldn't begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it's so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don't realize in our modern day society that we're walking around feeling like we are suppressing these things these feelings of anger and rage like i don't know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it's not okay to feel this way or it's not okay to 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feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it's almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it's okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it's so interesting that so many of us go on this journey let's call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it's it's fascinating i don't think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it's true i know this is the case for so many people it's still every time i hear it my head kind of explodes you know yeah you're so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn't have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you've\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don't know if you've had an old channel who shared anything like this i have had the odd client that's come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i'd feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it's hard to describe it but i have also witnessed some other people who have also had that experience so it's kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that's a really\n\nSPEAKER_01: good point yeah because then once you're well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven't been through what you've been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you've been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i've learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i've had a child i've got a son who's ten yeah and life's been rich and great and i've you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there's been lots of great things i've run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life's been life's been good and i feel like i've definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i'm a lifelong learner as well i'm always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i'm so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i'm curious because a lot of us think of recovery from these conditions like there's a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it's more of an ongoing journey so what's that been like for you is there self care things you need to still do you know is there any part of you that's worried about you know becoming unwell again what's life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it's been maybe seventeen years since i'd say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn't always understand it would be like trauma type symptoms would come up like i'd feel a bit shut down or a bit dissociated and i wouldn't know why and then i'd have to go and do some work on myself with a practitioner or perhaps i'd go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn't all about being chronically sick and definitely wasn't about being chronic sick anymore like i don't worry about that and i didn't worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i've been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that's kind of been a lot of my work actually has been a coach the gupta program more recent years i've trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it's just incredible you know over the years the many years that you've now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people's path to recovery and what are some of the biggest takeaways from the work that you've done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that's perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn't necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that's a piece sometimes i see in clients that perhaps isn't spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother's ill and their grandmother was ill or something like that what's going on in that family line that's created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that's all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that's an interesting\n\nSPEAKER_01: perspective it's fascinating i remember recently in animals and they can trace back if they have let's say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i'm sure i'm oversimplifying what you're saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don't understand fully about what impacts our health and our world it's really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you've met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven't already signed up for my newsletter i know there's a lot of recovery interviews and it's a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn't work the key resources that got them there so if you're worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you're not people watching if you're not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that's it for today thank you again francis thank you to all of you watching big hugs to you whatever you're going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n | 68.150312 | 2.361704 | 73179 | 73323 | 0.202500 | 0.750450 | None | None |
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"codes": [
{
"description": "Participant describes extreme exhaustion and a complete drain of energy when trying to stand after lying down, leading to being bedridden for 18 months. This fatigue persisted with partial recovery but never complete, impacting daily functioning for many years.",
"name": "Persistent fatigue and energy drain on standing",
"quotes": [
"\u0027i was there for the next eighteen months was in bed ... i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely\u0027",
"\u0027i was able to live a fairly good life but always tired constantly tired\u0027"
],
"slug": "persistent-fatigue-and-energy-drain"
},
{
"description": "Participant describes a cycle of pushing herself too hard (e.g. walking excessively) which led to picking up viruses and relapse back to debilitating fatigue forcing retirement and severe activity limitations.",
"name": "Overexertion leading to relapse and worsening symptoms",
"quotes": [
"\u0027then i started overdoing things again i was walking like ten miles every day ... i picked up a couple of viruses ... i woke up ... i just can\u0027t get out of bed i can\u0027t do this again\u0027",
"\u0027i actually had to retire at that stage and then being retired ... i kept pushing myself pushing myself\u0027"
],
"slug": "overexertion-and-relapse-cycle"
},
{
"description": "Despite exhaustion and physical inability to perform basic tasks, participant kept pushing herself to walk and exercise daily, even waking early to get dressed for walking before breakfast, leading to further energy depletion.",
"name": "Relentless pushing through fatigue despite physical limits",
"quotes": [
"\u0027i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes ... were in the bathroom ... i just went walking i\u0027d be back by seven eight nine o\u0027clock\u0027",
"\u0027then i couldn\u0027t really do anything for myself ... i had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else\u0027"
],
"slug": "relentless-pushing-despite-limitations"
},
{
"description": "Participant early on did not accept diagnosis fully, maintained denial to an extent, but later realized she needed to make significant lifestyle changes to manage her illness rather than hoping to return to previous activity levels.",
"name": "Realization and acceptance of necessary lifestyle changes",
"quotes": [
"\u0027i\u0027m not going to give into it but i am going to have to make life changes ... my life is going to have to change from that point of view\u0027",
"\u0027part of it was just ignorance be part of it\u0027"
],
"slug": "realization-to-accept-lifestyle-changes"
},
{
"description": "Initial skepticism toward brain retraining shifted to acceptance after understanding it addressed body\u2019s protective response and mental \u0027fight or flight\u0027 mode, leading to participation in program and positive initial results within two weeks.",
"name": "Embracing brain retraining as a key to recovery",
"quotes": [
"\u0027my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain\u0027",
"\u0027when he explaining ... your body has switched down some of the genes ... you\u0027re stuck in this fight too much ... it just started making sense\u0027",
"\u0027i contacted jason and went onto his program because it actually really made sense\u0027"
],
"slug": "brain-retraining-as-a-recovery-path"
},
{
"description": "Participant emphasizes importance of setting personal boundaries like letting phone calls go to voicemail to prevent energy drain and managing social demands, as well as self-monitoring to stop before reaching exhaustion.",
"name": "Learning to set boundaries to manage energy and avoid overcommitment",
"quotes": [
"\u0027if my phone rings i let it go to voicemail so i can deal with it when i want to\u0027",
"\u0027learning boundaries the hardest for me was learning boundaries\u0027"
],
"slug": "learning-boundaries-to-manage-energy"
},
{
"description": "Participant struggles with relaxation practices like meditation and acknowledges need to retrain herself to understand and accept \u0027real rest\u0027 familiar to healthy individuals but challenging for her to implement consistently.",
"name": "Difficulty with relaxation and understanding true rest",
"quotes": [
"\u0027i\u0027m not good at relaxing ... people say do meditation and this meditation is something i just ... struggled with it\u0027",
"\u0027now i make myself every day lay down and take a nap or do some meditation ... i\u0027m like real rest\u0027"
],
"slug": "difficulty-with-relaxation-and-rest"
},
{
"description": "Participant feels annoyed and flares up when people minimize or misunderstand her illness or recovery, particularly those who never had the illness or who judge her lifestyle choices, emphasizing emotional toll of misunderstanding.",
"name": "Frustration and occasional anger toward others\u2019 misunderstanding of illness",
"quotes": [
"\u0027when people say silly things sometimes ... i can flare up\u0027",
"\u0027i know what i\u0027ve been through ... when somebody minimizes it you can think no\u0027"
],
"slug": "frustration-with-misunderstanding-by-others"
},
{
"description": "Participant highlights her positive and obstinate personality as key factors in her refusal to accept permanent disability and her sustained belief in recovery and improvement despite long-term severe illness.",
"name": "Maintaining hope and positivity despite chronic illness challenges",
"quotes": [
"\u0027i\u0027m just a very positive person i think i\u0027m also obstinate\u0027",
"\u0027never ever felt ... i was almost like in denial\u0027"
],
"slug": "maintaining-hope-and-positivity-despite-chronic-illness"
},
{
"description": "Participant stresses importance of listening to body signals, recognizing triggers, and adjusting activities in timely fashion to prevent relapse and maintain health improvements.",
"name": "Developing self-awareness to avoid overexertion and manage symptoms",
"quotes": [
"\u0027i\u0027ve learnt to listen to myself listen to my body ... work out what my triggers are\u0027",
"\u0027i can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries\u0027"
],
"slug": "self-awareness-to-avoid-overexertion"
}
]
},
"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n\u003c/text\u003e\nAlways use the tools/JSON response.\n\n```json"
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"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n\u003c/text\u003e\n\n--\n\ncodes=[Code(slug=\u0027persistent-fatigue-and-energy-drain\u0027, name=\u0027Persistent fatigue and energy drain on standing\u0027, description=\u0027Participant describes extreme exhaustion and a complete drain of energy when trying to stand after lying down, leading to being bedridden for 18 months. This fatigue persisted with partial recovery but never complete, impacting daily functioning for many years.\u0027, quotes=[\"\u0027i was there for the next eighteen months was in bed ... i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely\u0027\", \"\u0027i was able to live a fairly good life but always tired constantly tired\u0027\"]), Code(slug=\u0027overexertion-and-relapse-cycle\u0027, name=\u0027Overexertion leading to relapse and worsening symptoms\u0027, description=\u0027Participant describes a cycle of pushing herself too hard (e.g. walking excessively) which led to picking up viruses and relapse back to debilitating fatigue forcing retirement and severe activity limitations.\u0027, quotes=[\"\u0027then i started overdoing things again i was walking like ten miles every day ... i picked up a couple of viruses ... i woke up ... i just can\u0027t get out of bed i can\u0027t do this again\u0027\", \"\u0027i actually had to retire at that stage and then being retired ... i kept pushing myself pushing myself\u0027\"]), Code(slug=\u0027relentless-pushing-despite-limitations\u0027, name=\u0027Relentless pushing through fatigue despite physical limits\u0027, description=\u0027Despite exhaustion and physical inability to perform basic tasks, participant kept pushing herself to walk and exercise daily, even waking early to get dressed for walking before breakfast, leading to further energy depletion.\u0027, quotes=[\"\u0027i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes ... were in the bathroom ... i just went walking i\u0027d be back by seven eight nine o\u0027clock\u0027\", \"\u0027then i couldn\u0027t really do anything for myself ... i had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else\u0027\"]), Code(slug=\u0027realization-to-accept-lifestyle-changes\u0027, name=\u0027Realization and acceptance of necessary lifestyle changes\u0027, description=\u0027Participant early on did not accept diagnosis fully, maintained denial to an extent, but later realized she needed to make significant lifestyle changes to manage her illness rather than hoping to return to previous activity levels.\u0027, quotes=[\"\u0027i\u0027m not going to give into it but i am going to have to make life changes ... my life is going to have to change from that point of view\u0027\", \"\u0027part of it was just ignorance be part of it\u0027\"]), Code(slug=\u0027brain-retraining-as-a-recovery-path\u0027, name=\u0027Embracing brain retraining as a key to recovery\u0027, description=\"Initial skepticism toward brain retraining shifted to acceptance after understanding it addressed body\u2019s protective response and mental \u0027fight or flight\u0027 mode, leading to participation in program and positive initial results within two weeks.\", quotes=[\"\u0027my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain\u0027\", \"\u0027when he explaining ... your body has switched down some of the genes ... you\u0027re stuck in this fight too much ... it just started making sense\u0027\", \"\u0027i contacted jason and went onto his program because it actually really made sense\u0027\"]), Code(slug=\u0027learning-boundaries-to-manage-energy\u0027, name=\u0027Learning to set boundaries to manage energy and avoid overcommitment\u0027, description=\u0027Participant emphasizes importance of setting personal boundaries like letting phone calls go to voicemail to prevent energy drain and managing social demands, as well as self-monitoring to stop before reaching exhaustion.\u0027, quotes=[\"\u0027if my phone rings i let it go to voicemail so i can deal with it when i want to\u0027\", \"\u0027learning boundaries the hardest for me was learning boundaries\u0027\"]), Code(slug=\u0027difficulty-with-relaxation-and-rest\u0027, name=\u0027Difficulty with relaxation and understanding true rest\u0027, description=\"Participant struggles with relaxation practices like meditation and acknowledges need to retrain herself to understand and accept \u0027real rest\u0027 familiar to healthy individuals but challenging for her to implement consistently.\", quotes=[\"\u0027i\u0027m not good at relaxing ... people say do meditation and this meditation is something i just ... struggled with it\u0027\", \"\u0027now i make myself every day lay down and take a nap or do some meditation ... i\u0027m like real rest\u0027\"]), Code(slug=\u0027frustration-with-misunderstanding-by-others\u0027, name=\u0027Frustration and occasional anger toward others\u2019 misunderstanding of illness\u0027, description=\u0027Participant feels annoyed and flares up when people minimize or misunderstand her illness or recovery, particularly those who never had the illness or who judge her lifestyle choices, emphasizing emotional toll of misunderstanding.\u0027, quotes=[\"\u0027when people say silly things sometimes ... i can flare up\u0027\", \"\u0027i know what i\u0027ve been through ... when somebody minimizes it you can think no\u0027\"]), Code(slug=\u0027maintaining-hope-and-positivity-despite-chronic-illness\u0027, name=\u0027Maintaining hope and positivity despite chronic illness challenges\u0027, description=\u0027Participant highlights her positive and obstinate personality as key factors in her refusal to accept permanent disability and her sustained belief in recovery and improvement despite long-term severe illness.\u0027, quotes=[\"\u0027i\u0027m just a very positive person i think i\u0027m also obstinate\u0027\", \"\u0027never ever felt ... i was almost like in denial\u0027\"]), Code(slug=\u0027self-awareness-to-avoid-overexertion\u0027, name=\u0027Developing self-awareness to avoid overexertion and manage symptoms\u0027, description=\u0027Participant stresses importance of listening to body signals, recognizing triggers, and adjusting activities in timely fashion to prevent relapse and maintain health improvements.\u0027, quotes=[\"\u0027i\u0027ve learnt to listen to myself listen to my body ... work out what my triggers are\u0027\", \"\u0027i can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries\u0027\"])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \u0027theme\u0027 is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \u0027share\u0027 codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\u0027s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clich\u00e9s, generalizations. Avoid the word \u0027Navigating\u0027 in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json"
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Trying to treat isolated symptoms was seen as overwhelming and ineffective, while a comprehensive approach contributed to gradual recovery.\",\"quotes\":[\"...my recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole...\",\"...targeting the specific symptoms was never healing them in my experience...\",\"...i pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone...\"]},{\"slug\":\"symptom-comparison-limitations\",\"name\":\"Desire for symptom comparison but finding it unhelpful\",\"description\":\"Participants expressed wanting to compare their symptoms with others to find reassurance or hopeful signs of recovery, but found this approach often unhelpful or even misleading. 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"description": "Participants described the importance of focusing on overall body support and holistic healing in managing MECFS rather than trying to treat each symptom individually. Trying to treat isolated symptoms was seen as overwhelming and ineffective, while a comprehensive approach contributed to gradual recovery.",
"name": "Focusing on holistic recovery instead of individual symptoms",
"quotes": [
"...my recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole...",
"...targeting the specific symptoms was never healing them in my experience...",
"...i pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone..."
],
"slug": "holistic-recovery-focus-mecfs"
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"description": "Participants expressed wanting to compare their symptoms with others to find reassurance or hopeful signs of recovery, but found this approach often unhelpful or even misleading. They noted that MECFS symptoms vary widely across individuals, making direct symptom comparisons unproductive and potentially discouraging.",
"name": "Desire for symptom comparison but finding it unhelpful",
"quotes": [
"...people want to compare their symptoms against mine... to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope...",
"...if someone is sizing up their illness against my illness and it doesn\u0027t match exactly... that means that they do not have a chance of recovering...",
"...don\u0027t get too caught up on comparing symptoms... scanning information for what were their test results... it probably won\u0027t help you personally..."
],
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"description": "Participants described symptom management during MECFS as largely palliative\u2014to ease discomfort\u2014not a path to cure. Painkillers, sedatives, and other symptom treatments helped manage the suffering temporarily but did not address the underlying illness, which required a broader healing strategy.",
"name": "Using symptom management mainly for comfort rather than recovery",
"quotes": [
"...symptom management that i did was more palliative and not so much about recovery...",
"...if i had pain i might take painkillers or if i was having really bad problems with sleeping... i might go see my doctor and get some prescription sedatives...",
"...targeting the specific symptoms was never healing them in my experience..."
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"slug": "symptom-management-as-palliation-not-cure"
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"description": "Participants highlighted the importance of creating personalized recovery plans tailored to each individual\u0027s unique symptoms, lifestyle, and disease experience. Recovery methods that worked for one person might not work for another, and pacing and treatments should be adapted accordingly.",
"name": "Need to tailor recovery plans individually to each person\u0027s lifestyle and journey",
"quotes": [
"...somebody\u0027s recovery plan and them selecting the things they want to try needs to be tailored as well...",
"...pacing has to be tailored individually for a particular person because their life is so different...",
"...look at your own life like a scientist without freaking out about everything..."
],
"slug": "need-for-personalized-recovery-plans"
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"description": "Participants shared feelings of desperation, frustration, and disillusionment from seeking specific symptom fixes through extensive research, treatments, and comparisons. Many attempts, including costly and risky interventions, failed to provide holistic healing, leading to emotional exhaustion and the need to find alternative strategies.",
"name": "Frustration and disappointment from focusing on symptom-specific fixes",
"quotes": [
"...i spent thousands of hours googling my symptoms...",
"...this led me to spend thousands of dollars... i almost poisoning myself by buying organic elderberries...",
"...i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one..."
],
"slug": "frustration-with-symptom-focused-help-seeking"
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"description": "Participants expressed the need to set boundaries around conversations about symptoms, including avoiding one-on-one symptom troubleshooting. Sharing their recovery stories was positive but revisiting symptoms was traumatic and could be overwhelming, necessitating limits to preserve well-being.",
"name": "Setting emotional boundaries around discussing past symptoms",
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"...i now have boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either...",
"...writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there...",
"...consider that people who share their stories are still human and it might still be fresh their challenges on their journey..."
],
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"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n\u003c/text\u003e\nAlways use the tools/JSON response.\n\n```json"
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"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n\u003c/text\u003e\n\n--\n\ncodes=[Code(slug=\u0027holistic-recovery-focus-mecfs\u0027, name=\u0027Focusing on holistic recovery instead of individual symptoms\u0027, description=\u0027Participants described the importance of focusing on overall body support and holistic healing in managing MECFS rather than trying to treat each symptom individually. Trying to treat isolated symptoms was seen as overwhelming and ineffective, while a comprehensive approach contributed to gradual recovery.\u0027, quotes=[\u0027...my recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole...\u0027, \u0027...targeting the specific symptoms was never healing them in my experience...\u0027, \u0027...i pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone...\u0027]), Code(slug=\u0027symptom-comparison-limitations\u0027, name=\u0027Desire for symptom comparison but finding it unhelpful\u0027, description=\u0027Participants expressed wanting to compare their symptoms with others to find reassurance or hopeful signs of recovery, but found this approach often unhelpful or even misleading. They noted that MECFS symptoms vary widely across individuals, making direct symptom comparisons unproductive and potentially discouraging.\u0027, quotes=[\"...people want to compare their symptoms against mine... to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope...\", \"...if someone is sizing up their illness against my illness and it doesn\u0027t match exactly... that means that they do not have a chance of recovering...\", \"...don\u0027t get too caught up on comparing symptoms... scanning information for what were their test results... it probably won\u0027t help you personally...\"]), Code(slug=\u0027symptom-management-as-palliation-not-cure\u0027, name=\u0027Using symptom management mainly for comfort rather than recovery\u0027, description=\u0027Participants described symptom management during MECFS as largely palliative\u2014to ease discomfort\u2014not a path to cure. Painkillers, sedatives, and other symptom treatments helped manage the suffering temporarily but did not address the underlying illness, which required a broader healing strategy.\u0027, quotes=[\u0027...symptom management that i did was more palliative and not so much about recovery...\u0027, \u0027...if i had pain i might take painkillers or if i was having really bad problems with sleeping... i might go see my doctor and get some prescription sedatives...\u0027, \u0027...targeting the specific symptoms was never healing them in my experience...\u0027]), Code(slug=\u0027need-for-personalized-recovery-plans\u0027, name=\"Need to tailor recovery plans individually to each person\u0027s lifestyle and journey\", description=\"Participants highlighted the importance of creating personalized recovery plans tailored to each individual\u0027s unique symptoms, lifestyle, and disease experience. Recovery methods that worked for one person might not work for another, and pacing and treatments should be adapted accordingly.\", quotes=[\"...somebody\u0027s recovery plan and them selecting the things they want to try needs to be tailored as well...\", \u0027...pacing has to be tailored individually for a particular person because their life is so different...\u0027, \u0027...look at your own life like a scientist without freaking out about everything...\u0027]), Code(slug=\u0027frustration-with-symptom-focused-help-seeking\u0027, name=\u0027Frustration and disappointment from focusing on symptom-specific fixes\u0027, description=\u0027Participants shared feelings of desperation, frustration, and disillusionment from seeking specific symptom fixes through extensive research, treatments, and comparisons. Many attempts, including costly and risky interventions, failed to provide holistic healing, leading to emotional exhaustion and the need to find alternative strategies.\u0027, quotes=[\u0027...i spent thousands of hours googling my symptoms...\u0027, \u0027...this led me to spend thousands of dollars... i almost poisoning myself by buying organic elderberries...\u0027, \"...i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one...\"]), Code(slug=\u0027emotional-boundaries-around-symptom-discussion\u0027, name=\u0027Setting emotional boundaries around discussing past symptoms\u0027, description=\u0027Participants expressed the need to set boundaries around conversations about symptoms, including avoiding one-on-one symptom troubleshooting. Sharing their recovery stories was positive but revisiting symptoms was traumatic and could be overwhelming, necessitating limits to preserve well-being.\u0027, quotes=[\u0027...i now have boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either...\u0027, \"...writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there...\", \u0027...consider that people who share their stories are still human and it might still be fresh their challenges on their journey...\u0027])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \u0027theme\u0027 is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \u0027share\u0027 codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\u0027s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clich\u00e9s, generalizations. Avoid the word \u0027Navigating\u0027 in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json"
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"description": "This code captures the deep appreciation and awe the participant feels about living a life they once only dreamed of due to recovering from chronic illness. They describe moments of enjoying life with childlike wonder and being grateful each day despite small setbacks.",
"name": "Walking miracle gratitude for life after chronic illness",
"quotes": [
"I\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible",
"this joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes",
"It\u0027s like being like when you watch a six year old wandering through the world ... these new eyes where you just get to almost be childlike again"
],
"slug": "walking-miracle-gratitude-for-life-38"
},
{
"description": "The participant experiences detachment and struggle maintaining friendships with physically healthy friends who complain about their lives. They find it hard to relate to people who seem to take their health for granted and have difficulty understanding those who choose not to engage in activities like working out, which the participant once loved but had to give up.",
"name": "Difficulty relating to healthy friends post illness",
"quotes": [
"It is hard though to have friends who\u0027ve never been through it ... and they complain about their lives and i just feel such a detachment sometimes",
"Sometimes it\u0027s hard for me to be their friend now because I\u0027m like you have it all",
"I really struggle with people who seem physically able to go to the gym but just choose not to",
"I would give anything to (work out) because i love working out so that\u0027s one of my things that i really miss"
],
"slug": "difficulty-relating-to-healthy-friends-81"
},
{
"description": "The participant recounts the challenges in receiving an accurate diagnosis. Initially diagnosed with fibromyalgia, their fatigue symptoms were overlooked which delayed appropriate treatment. They express frustration with the medical system\u0027s lack of understanding and care for their chronic fatigue symptoms over many years.",
"name": "Frustration with delayed diagnosis and misdiagnosis",
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"I was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued",
"no one would even really treat it i don\u0027t think they really what to do",
"It took a while before i even got the chronic fatigue diagnosis but no one would even really treat it for many years"
],
"slug": "diagnosis-delay-and-misdiagnosis-60"
},
{
"description": "The participant took an active role in managing their health by rehabilitating themselves, researching doctors, and eventually moving to access better medical care. They found a nurse practitioner who performed comprehensive blood work and helped identify underlying infections. This proactive approach was crucial for their eventual diagnosis and treatment plan.",
"name": "Self advocacy and research to access better healthcare",
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"I kept rehabilitate myself ... researching doctors researching as much as i could",
"Eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors",
"She was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that"
],
"slug": "self-advocacy-for-healthcare-72"
},
{
"description": "The participant was diagnosed with a rare mitochondrial disease through full genome testing. This diagnosis explained their inability to fight infections and fatigue. Treatment included a mitochondrial cocktail which helped their body produce mitochondria and regain strength to combat infections, marking a turning point in their recovery.",
"name": "Discovery and treatment of genetic mitochondrial disease",
"quotes": [
"I did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven",
"He put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections",
"By him supplementing and boosting my mitochondria i could now fight the infections"
],
"slug": "genetic-condition-discovery-and-treatment-75"
},
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"description": "The participant emphasizes the importance of significant lifestyle modifications for healing including an elimination diet, gradual movement rehabilitation, and removing environmental toxins. Specific dietary changes involved cutting out dairy, gluten, sugar, and nightshades, which were once inflammatory but sometimes reintroduced gradually.",
"name": "Drastic lifestyle changes including diet and environment for recovery",
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"I had to dramatically change my diet ... use food as medicine as a mindset",
"I removed all toxic ingredients immunotoxic i water filtration system on my house",
"Dairy gluten and sugar were main offenders and nightshades bothered me for a while"
],
"slug": "drastic-lifestyle-changes-for-recovery-81"
},
{
"description": "The participant describes an intense physical addiction to sugar that disrupted their health and sleep patterns. Through gut healing and probiotics, cravings diminished, allowing them to develop a healthier relationship with food and regain control over their eating habits, marking an important step in recovery.",
"name": "Overcoming intense sugar addiction to support healing",
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"Sugar was a massive one for me and sugar was a tough one for me ... i clearly had a physical addiction",
"I would get up in the middle of the night every single night and eat sugar",
"Once my body started healing the cravings went away"
],
"slug": "overcoming-sugar-addiction-for-healing-56"
},
{
"description": "The participant highlights the importance of very gradual and gentle movement therapy rather than typical exercise. They emphasize the challenges of balancing activity and rest in chronic fatigue syndrome, noting that even a few minutes of movement can be critical for oxygenation and lymphatic flow while avoiding pushing to the point of relapse.",
"name": "Movement therapy as gentle rehabilitation rather than exercise",
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"I had to gradually increase my ability to move",
"My exercise program was so small you know it was one to two minutes a day and in the beginning not even every single day",
"I couldn\u2019t rest my way out of this i couldn\u2019t just lay in bed or lay on the couch all day"
],
"slug": "movement-therapy-as-gentle-rehab-63"
},
{
"description": "The participant reflects on how chronic illness fundamentally changed their identity, values, and spirituality. They describe feelings of humility, acceptance, and deeper self-worth beyond professional achievements. The illness brought perspective, spiritual growth, gratitude, and a renewed appreciation for life and relationships.",
"name": "Psychological impact and personal growth from chronic illness experience",
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"It humbled me changed me i maybe was prideful before i wouldn\u2019t say i had a spirituality before",
"I had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that",
"this illness catapults our growth and puts us in a better direction"
],
"slug": "psychological-impact-and-growth-from-illness-80"
},
{
"description": "The participant shares the anxiety and uncertainty during pregnancy about whether normal pregnancy symptoms like fatigue and headaches signal illness relapse. They learn to differentiate normal pregnancy experiences from chronic illness symptoms, practicing self-compassion and cautious optimism about their health journey.",
"name": "Fear and anxiety about pregnancy symptoms being illness relapse",
"quotes": [
"I keep reminding myself these are normal symptoms it\u0027s triggering sometimes to be like is this normal fatigue or is this going back",
"I keep reminding myself no it\u2019s normal to have headaches when you\u2019re pregnant it\u2019s normal to feel tired",
"It has been quite a journey i keep reminding myself sometimes"
],
"slug": "fear-and-anxiety-during-pregnancy-after-illness-64"
},
{
"description": "The participant expresses how seeing recovery stories from others provides essential hope and motivation for their own healing journey. They highlight the loneliness and despair without such examples and stress the importance of community and shared experiences in sustaining perseverance through chronic illness.",
"name": "Hope and positivity through seeing others recover from chronic illness",
"quotes": [
"It\u0027s so nice to see so many people that are getting past these things",
"I remember when i first got sick i was trying to find recovery stories and i just couldn\u2019t find any",
"People start reaching out to me it\u0027s crazy like hey so nice to meet you you recovered as well"
],
"slug": "hope-and-positivity-in-chronic-illness-recovery-57"
},
{
"description": "The participant credits their recovery journey to extensive self-education about their condition combined with their faith and spiritual trust. They emphasize the importance of trusting the healing process and rejecting limiting prognoses, comparing learning about illness to earning a \u0027bachelor\u2019s degree\u0027 in chronic illness.",
"name": "Self empowerment through knowledge acquisition and faith in recovery",
"quotes": [
"I would just tell myself to trust that process",
"I had to go through all those years of research and learning",
"It was like getting a bachelor\u2019s degree in chronic illness",
"You cannot limit a limitless guy"
],
"slug": "self-empowerment-through-knowledge-and-faith-64"
}
]
},
"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n\u003c/text\u003e\nAlways use the tools/JSON response.\n\n```json"
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"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n\u003c/text\u003e\n\n--\n\ncodes=[Code(slug=\u0027walking-miracle-gratitude-for-life-38\u0027, name=\u0027Walking miracle gratitude for life after chronic illness\u0027, description=\u0027This code captures the deep appreciation and awe the participant feels about living a life they once only dreamed of due to recovering from chronic illness. They describe moments of enjoying life with childlike wonder and being grateful each day despite small setbacks.\u0027, quotes=[\"I\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible\", \"this joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\", \"It\u0027s like being like when you watch a six year old wandering through the world ... these new eyes where you just get to almost be childlike again\"]), Code(slug=\u0027difficulty-relating-to-healthy-friends-81\u0027, name=\u0027Difficulty relating to healthy friends post illness\u0027, description=\u0027The participant experiences detachment and struggle maintaining friendships with physically healthy friends who complain about their lives. They find it hard to relate to people who seem to take their health for granted and have difficulty understanding those who choose not to engage in activities like working out, which the participant once loved but had to give up.\u0027, quotes=[\"It is hard though to have friends who\u0027ve never been through it ... and they complain about their lives and i just feel such a detachment sometimes\", \"Sometimes it\u0027s hard for me to be their friend now because I\u0027m like you have it all\", \u0027I really struggle with people who seem physically able to go to the gym but just choose not to\u0027, \"I would give anything to (work out) because i love working out so that\u0027s one of my things that i really miss\"]), Code(slug=\u0027diagnosis-delay-and-misdiagnosis-60\u0027, name=\u0027Frustration with delayed diagnosis and misdiagnosis\u0027, description=\"The participant recounts the challenges in receiving an accurate diagnosis. Initially diagnosed with fibromyalgia, their fatigue symptoms were overlooked which delayed appropriate treatment. They express frustration with the medical system\u0027s lack of understanding and care for their chronic fatigue symptoms over many years.\", quotes=[\u0027I was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued\u0027, \"no one would even really treat it i don\u0027t think they really what to do\", \u0027It took a while before i even got the chronic fatigue diagnosis but no one would even really treat it for many years\u0027]), Code(slug=\u0027self-advocacy-for-healthcare-72\u0027, name=\u0027Self advocacy and research to access better healthcare\u0027, description=\u0027The participant took an active role in managing their health by rehabilitating themselves, researching doctors, and eventually moving to access better medical care. They found a nurse practitioner who performed comprehensive blood work and helped identify underlying infections. This proactive approach was crucial for their eventual diagnosis and treatment plan.\u0027, quotes=[\u0027I kept rehabilitate myself ... researching doctors researching as much as i could\u0027, \"Eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors\", \u0027She was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that\u0027]), Code(slug=\u0027genetic-condition-discovery-and-treatment-75\u0027, name=\u0027Discovery and treatment of genetic mitochondrial disease\u0027, description=\u0027The participant was diagnosed with a rare mitochondrial disease through full genome testing. This diagnosis explained their inability to fight infections and fatigue. Treatment included a mitochondrial cocktail which helped their body produce mitochondria and regain strength to combat infections, marking a turning point in their recovery.\u0027, quotes=[\u0027I did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven\u0027, \"He put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections\", \u0027By him supplementing and boosting my mitochondria i could now fight the infections\u0027]), Code(slug=\u0027drastic-lifestyle-changes-for-recovery-81\u0027, name=\u0027Drastic lifestyle changes including diet and environment for recovery\u0027, description=\u0027The participant emphasizes the importance of significant lifestyle modifications for healing including an elimination diet, gradual movement rehabilitation, and removing environmental toxins. Specific dietary changes involved cutting out dairy, gluten, sugar, and nightshades, which were once inflammatory but sometimes reintroduced gradually.\u0027, quotes=[\u0027I had to dramatically change my diet ... use food as medicine as a mindset\u0027, \u0027I removed all toxic ingredients immunotoxic i water filtration system on my house\u0027, \u0027Dairy gluten and sugar were main offenders and nightshades bothered me for a while\u0027]), Code(slug=\u0027overcoming-sugar-addiction-for-healing-56\u0027, name=\u0027Overcoming intense sugar addiction to support healing\u0027, description=\u0027The participant describes an intense physical addiction to sugar that disrupted their health and sleep patterns. Through gut healing and probiotics, cravings diminished, allowing them to develop a healthier relationship with food and regain control over their eating habits, marking an important step in recovery.\u0027, quotes=[\u0027Sugar was a massive one for me and sugar was a tough one for me ... i clearly had a physical addiction\u0027, \u0027I would get up in the middle of the night every single night and eat sugar\u0027, \u0027Once my body started healing the cravings went away\u0027]), Code(slug=\u0027movement-therapy-as-gentle-rehab-63\u0027, name=\u0027Movement therapy as gentle rehabilitation rather than exercise\u0027, description=\u0027The participant highlights the importance of very gradual and gentle movement therapy rather than typical exercise. They emphasize the challenges of balancing activity and rest in chronic fatigue syndrome, noting that even a few minutes of movement can be critical for oxygenation and lymphatic flow while avoiding pushing to the point of relapse.\u0027, quotes=[\u0027I had to gradually increase my ability to move\u0027, \u0027My exercise program was so small you know it was one to two minutes a day and in the beginning not even every single day\u0027, \u0027I couldn\u2019t rest my way out of this i couldn\u2019t just lay in bed or lay on the couch all day\u0027]), Code(slug=\u0027psychological-impact-and-growth-from-illness-80\u0027, name=\u0027Psychological impact and personal growth from chronic illness experience\u0027, description=\u0027The participant reflects on how chronic illness fundamentally changed their identity, values, and spirituality. They describe feelings of humility, acceptance, and deeper self-worth beyond professional achievements. The illness brought perspective, spiritual growth, gratitude, and a renewed appreciation for life and relationships.\u0027, quotes=[\u0027It humbled me changed me i maybe was prideful before i wouldn\u2019t say i had a spirituality before\u0027, \u0027I had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\u0027, \u0027this illness catapults our growth and puts us in a better direction\u0027]), Code(slug=\u0027fear-and-anxiety-during-pregnancy-after-illness-64\u0027, name=\u0027Fear and anxiety about pregnancy symptoms being illness relapse\u0027, description=\u0027The participant shares the anxiety and uncertainty during pregnancy about whether normal pregnancy symptoms like fatigue and headaches signal illness relapse. They learn to differentiate normal pregnancy experiences from chronic illness symptoms, practicing self-compassion and cautious optimism about their health journey.\u0027, quotes=[\"I keep reminding myself these are normal symptoms it\u0027s triggering sometimes to be like is this normal fatigue or is this going back\", \u0027I keep reminding myself no it\u2019s normal to have headaches when you\u2019re pregnant it\u2019s normal to feel tired\u0027, \u0027It has been quite a journey i keep reminding myself sometimes\u0027]), Code(slug=\u0027hope-and-positivity-in-chronic-illness-recovery-57\u0027, name=\u0027Hope and positivity through seeing others recover from chronic illness\u0027, description=\u0027The participant expresses how seeing recovery stories from others provides essential hope and motivation for their own healing journey. They highlight the loneliness and despair without such examples and stress the importance of community and shared experiences in sustaining perseverance through chronic illness.\u0027, quotes=[\"It\u0027s so nice to see so many people that are getting past these things\", \u0027I remember when i first got sick i was trying to find recovery stories and i just couldn\u2019t find any\u0027, \"People start reaching out to me it\u0027s crazy like hey so nice to meet you you recovered as well\"]), Code(slug=\u0027self-empowerment-through-knowledge-and-faith-64\u0027, name=\u0027Self empowerment through knowledge acquisition and faith in recovery\u0027, description=\"The participant credits their recovery journey to extensive self-education about their condition combined with their faith and spiritual trust. They emphasize the importance of trusting the healing process and rejecting limiting prognoses, comparing learning about illness to earning a \u0027bachelor\u2019s degree\u0027 in chronic illness.\", quotes=[\u0027I would just tell myself to trust that process\u0027, \u0027I had to go through all those years of research and learning\u0027, \u0027It was like getting a bachelor\u2019s degree in chronic illness\u0027, \u0027You cannot limit a limitless guy\u0027])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \u0027theme\u0027 is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \u0027share\u0027 codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\u0027s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clich\u00e9s, generalizations. Avoid the word \u0027Navigating\u0027 in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json"
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"arguments": "{\"codes\":[{\"slug\":\"scary-and-confusing-early-illness-experience\",\"name\":\"Scary and confusing early illness experience\",\"description\":\"Participant describes the initial onset of chronic fatigue as confusing, frightening, and strange with symptoms that were hard to understand and manage. She was overwhelmed by sudden health decline and had to leave university, indicating a disruptive and scary period.\",\"quotes\":[\"i just didn\u0027t feel well at all... felt a bit fluy felt a bit strange felt a bit scared because it felt really weird\",\"i didn\u0027t know what was going on\",\"it was a really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed\"]},{\"slug\":\"feeling-isolated-due-to-illness\",\"name\":\"Feeling isolated due to illness\",\"description\":\"Participant felt isolated because she had to return home and was separated from her friends who were still attending university, leading to feelings of loneliness with limited social support beyond family.\",\"quotes\":[\"all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family\",\"it was a very tough time\"]},{\"slug\":\"rejection-of-depression-diagnosis-and-emotional-awareness\",\"name\":\"Rejection of depression diagnosis and emotional awareness\",\"description\":\"Participant rejected doctors\u0027 initial diagnosis of depression as the sole cause, sensing a deeper underlying physical illness despite emotional challenges and some depressive feelings related to her illness.\",\"quotes\":[\"one of the first doctors said she just thought i was depressed that was it\",\"i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell\"]},{\"slug\":\"hope-from-meditation-and-yoga-practices\",\"name\":\"Hope from meditation and yoga practices\",\"description\":\"Early engagement with meditation, yoga, and breath work brought short-lived improvements, offering participant moments of hope and relief, though benefits were often temporary and inconsistent over long recovery.\",\"quotes\":[\"i thought i did think quite early on well perhaps meditation and yoga can help me heal\",\"doing the alternate nostril breathing and noticing i felt different after doing it\",\"sometimes i\u0027d notice i felt considerably better after doing one\"]},{\"slug\":\"desperation-leads-to-trying-various-alternative-therapies\",\"name\":\"Desperation leads to trying various alternative therapies\",\"description\":\"Participant pursued numerous alternative therapies out of desperation including acupuncture, reiki, nutrition therapy, and colon hydrotherapy, often with limited or mixed success, reflecting urgent search for a cure.\",\"quotes\":[\"i\u0027d go for reiki and i\u0027d go for this and i go for that\",\"i even flew to america...to work with a healer\",\"just loads of things i was i was so desperate to be well\"]},{\"slug\":\"realization-of-suppressed-anger-and-unresolved-trauma\",\"name\":\"Realization of suppressed anger and unresolved trauma\",\"description\":\"Participant identified a deep pattern of suppressing anger and unreleased trauma impacting her recovery, acknowledging emotional blocks and the role of unresolved feelings in her physical symptoms.\",\"quotes\":[\"i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\",\"one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs\"]},{\"slug\":\"mind-body-connection-and-trauma-understanding\",\"name\":\"Mind-body connection and trauma understanding\",\"description\":\"Participant found significant healing through acknowledging the mind-body link, understanding symptoms as manifestations of trauma such as freeze responses, and exploring emotional triggers underlying physical states.\",\"quotes\":[\"it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom\",\"a lot of it was the impact of trauma on my system manifesting physically like a freeze response\",\"started to really understand the mind body 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spiritual some kind of spiritual awakening\",\"sometimes i felt like i left my body and i was like connecting with the whole universe\",\"i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way\"]},{\"slug\":\"ongoing-self-care-and-regulation-post-recovery\",\"name\":\"Ongoing self-care and regulation post recovery\",\"description\":\"Even years after recovery, participant still needed to manage emotional and trauma-related symptoms with self-regulation strategies like nature exposure and therapeutic work to maintain balance and well-being.\",\"quotes\":[\"i did have periodically sort of what i would now describe as trauma type symptoms\",\"i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature\",\"that can still happen today but not to the extent it was\"]},{\"slug\":\"career-shift-driven-by-healing-experience\",\"name\":\"Career shift driven by healing 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the root but a wider family system issue\"]}]}",
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{
"description": "Participant describes the initial onset of chronic fatigue as confusing, frightening, and strange with symptoms that were hard to understand and manage. She was overwhelmed by sudden health decline and had to leave university, indicating a disruptive and scary period.",
"name": "Scary and confusing early illness experience",
"quotes": [
"i just didn\u0027t feel well at all... felt a bit fluy felt a bit strange felt a bit scared because it felt really weird",
"i didn\u0027t know what was going on",
"it was a really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed"
],
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{
"description": "Participant felt isolated because she had to return home and was separated from her friends who were still attending university, leading to feelings of loneliness with limited social support beyond family.",
"name": "Feeling isolated due to illness",
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"all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family",
"it was a very tough time"
],
"slug": "feeling-isolated-due-to-illness"
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{
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"name": "Rejection of depression diagnosis and emotional awareness",
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"one of the first doctors said she just thought i was depressed that was it",
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],
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"name": "Hope from meditation and yoga practices",
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"doing the alternate nostril breathing and noticing i felt different after doing it",
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],
"slug": "hope-from-meditation-and-yoga-practices"
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"name": "Desperation leads to trying various alternative therapies",
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"i\u0027d go for reiki and i\u0027d go for this and i go for that",
"i even flew to america...to work with a healer",
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],
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"name": "Realization of suppressed anger and unresolved trauma",
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"i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there",
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],
"slug": "realization-of-suppressed-anger-and-unresolved-trauma"
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"description": "Participant found significant healing through acknowledging the mind-body link, understanding symptoms as manifestations of trauma such as freeze responses, and exploring emotional triggers underlying physical states.",
"name": "Mind-body connection and trauma understanding",
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"it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom",
"a lot of it was the impact of trauma on my system manifesting physically like a freeze response",
"started to really understand the mind body connection"
],
"slug": "mind-body-connection-and-trauma-understanding"
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{
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"name": "Learning authentic self-expression and setting boundaries",
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"it\u0027s okay to have needs"
],
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{
"description": "Spiritual awakening, meditation, and mystical experiences were deeply meaningful but sometimes destabilizing aspects of the recovery journey, requiring learning to balance spiritual insights with daily functioning.",
"name": "Spiritual experience as part of healing journey",
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"i had a kundalini or spiritual some kind of spiritual awakening",
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],
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{
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"name": "Ongoing self-care and regulation post recovery",
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"i did have periodically sort of what i would now describe as trauma type symptoms",
"i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature",
"that can still happen today but not to the extent it was"
],
"slug": "ongoing-self-care-and-regulation-post-recovery"
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{
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"name": "Career shift driven by healing experience",
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"i\u0027ve done lots of different kinds of therapeutic and coaching trainings",
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"i do keep up quite a few of the practices that support me to heal and new practices"
],
"slug": "career-shift-driven-by-healing-experience"
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{
"description": "Participant highlights the role of ancestral and family line trauma influencing illness patterns, recognizing wider systemic and generational factors contributing to chronic fatigue symptoms.",
"name": "Recognizing familial and ancestral trauma impact on health",
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"a lot of my trauma wasn\u0027t necessarily personal but was ancestral... took on from my family line",
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],
"slug": "recognizing-familial-and-ancestral-trauma-impact-on-health"
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"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n\u003c/text\u003e\nAlways use the tools/JSON response.\n\n```json"
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"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. 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Be concise. \n\n\u003ctext\u003e\nSPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n\u003c/text\u003e\n\n--\n\ncodes=[Code(slug=\u0027scary-and-confusing-early-illness-experience\u0027, name=\u0027Scary and confusing early illness experience\u0027, description=\u0027Participant describes the initial onset of chronic fatigue as confusing, frightening, and strange with symptoms that were hard to understand and manage. She was overwhelmed by sudden health decline and had to leave university, indicating a disruptive and scary period.\u0027, quotes=[\"i just didn\u0027t feel well at all... felt a bit fluy felt a bit strange felt a bit scared because it felt really weird\", \"i didn\u0027t know what was going on\", \"it was a really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed\"]), Code(slug=\u0027feeling-isolated-due-to-illness\u0027, name=\u0027Feeling isolated due to illness\u0027, description=\u0027Participant felt isolated because she had to return home and was separated from her friends who were still attending university, leading to feelings of loneliness with limited social support beyond family.\u0027, quotes=[\"all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family\", \u0027it was a very tough time\u0027]), Code(slug=\u0027rejection-of-depression-diagnosis-and-emotional-awareness\u0027, name=\u0027Rejection of depression diagnosis and emotional awareness\u0027, description=\"Participant rejected doctors\u0027 initial diagnosis of depression as the sole cause, sensing a deeper underlying physical illness despite emotional challenges and some depressive feelings related to her illness.\", quotes=[\u0027one of the first doctors said she just thought i was depressed that was it\u0027, \"i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell\"]), Code(slug=\u0027hope-from-meditation-and-yoga-practices\u0027, name=\u0027Hope from meditation and yoga practices\u0027, description=\u0027Early engagement with meditation, yoga, and breath work brought short-lived improvements, offering participant moments of hope and relief, though benefits were often temporary and inconsistent over long recovery.\u0027, quotes=[\u0027i thought i did think quite early on well perhaps meditation and yoga can help me heal\u0027, \u0027doing the alternate nostril breathing and noticing i felt different after doing it\u0027, \"sometimes i\u0027d notice i felt considerably better after doing one\"]), Code(slug=\u0027desperation-leads-to-trying-various-alternative-therapies\u0027, name=\u0027Desperation leads to trying various alternative therapies\u0027, description=\u0027Participant pursued numerous alternative therapies out of desperation including acupuncture, reiki, nutrition therapy, and colon hydrotherapy, often with limited or mixed success, reflecting urgent search for a cure.\u0027, quotes=[\"i\u0027d go for reiki and i\u0027d go for this and i go for that\", \u0027i even flew to america...to work with a healer\u0027, \u0027just loads of things i was i was so desperate to be well\u0027]), Code(slug=\u0027realization-of-suppressed-anger-and-unresolved-trauma\u0027, name=\u0027Realization of suppressed anger and unresolved trauma\u0027, description=\u0027Participant identified a deep pattern of suppressing anger and unreleased trauma impacting her recovery, acknowledging emotional blocks and the role of unresolved feelings in her physical symptoms.\u0027, quotes=[\"i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\", \u0027one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs\u0027]), Code(slug=\u0027mind-body-connection-and-trauma-understanding\u0027, name=\u0027Mind-body connection and trauma understanding\u0027, description=\u0027Participant found significant healing through acknowledging the mind-body link, understanding symptoms as manifestations of trauma such as freeze responses, and exploring emotional triggers underlying physical states.\u0027, quotes=[\u0027it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom\u0027, \u0027a lot of it was the impact of trauma on my system manifesting physically like a freeze response\u0027, \u0027started to really understand the mind body connection\u0027]), Code(slug=\u0027learning-authentic-self-expression-and-setting-boundaries\u0027, name=\u0027Learning authentic self-expression and setting boundaries\u0027, description=\u0027Recovery involved learning to express authentic emotions and needs without fear of upsetting others, using communication skills like non-violent communication to balance self-care and relationships.\u0027, quotes=[\u0027learning to be more myself more authentic\u0027, \u0027learning non violent communication... a way that i could communicate my feelings without it also being too much for someone else\u0027, \"it\u0027s okay to have needs\"]), Code(slug=\u0027spiritual-experience-as-part-of-healing-journey\u0027, name=\u0027Spiritual experience as part of healing journey\u0027, description=\u0027Spiritual awakening, meditation, and mystical experiences were deeply meaningful but sometimes destabilizing aspects of the recovery journey, requiring learning to balance spiritual insights with daily functioning.\u0027, quotes=[\u0027i had a kundalini or spiritual some kind of spiritual awakening\u0027, \u0027sometimes i felt like i left my body and i was like connecting with the whole universe\u0027, \u0027i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way\u0027]), Code(slug=\u0027ongoing-self-care-and-regulation-post-recovery\u0027, name=\u0027Ongoing self-care and regulation post recovery\u0027, description=\u0027Even years after recovery, participant still needed to manage emotional and trauma-related symptoms with self-regulation strategies like nature exposure and therapeutic work to maintain balance and well-being.\u0027, quotes=[\u0027i did have periodically sort of what i would now describe as trauma type symptoms\u0027, \"i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature\", \u0027that can still happen today but not to the extent it was\u0027]), Code(slug=\u0027career-shift-driven-by-healing-experience\u0027, name=\u0027Career shift driven by healing experience\u0027, description=\"Participant\u0027s prolonged healing journey influenced her career choice toward coaching and therapeutic work, integrating personal recovery insights into professional roles and continuous learning.\", quotes=[\"i\u0027ve done lots of different kinds of therapeutic and coaching trainings\", \u0027been working in this field myself nearly twenty years\u0027, \u0027i do keep up quite a few of the practices that support me to heal and new practices\u0027]), Code(slug=\u0027recognizing-familial-and-ancestral-trauma-impact-on-health\u0027, name=\u0027Recognizing familial and ancestral trauma impact on health\u0027, description=\u0027Participant highlights the role of ancestral and family line trauma influencing illness patterns, recognizing wider systemic and generational factors contributing to chronic fatigue symptoms.\u0027, quotes=[\"a lot of my trauma wasn\u0027t necessarily personal but was ancestral... took on from my family line\", \u0027sometimes... an illness in one person might not be the root but a wider family system issue\u0027])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \u0027theme\u0027 is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \u0027share\u0027 codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\u0027s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clich\u00e9s, generalizations. Avoid the word \u0027Navigating\u0027 in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json"
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can feed into symptoms\",\"i just talk to myself in a compassionate way... i\u0027m so sorry... what do you want or need right now\",\"to realize having compassion on ourselves is helpful and can soften the blow\"]},{\"slug\":\"impact-of-personality-on-symptom-perpetuation\",\"name\":\"Role of personality traits like perfectionism in illness experience\",\"description\":\"Perfectionism, people-pleasing, conscientiousness and holding in emotions were discussed as personality traits common in those with ME/CFS, contributing to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.\",\"quotes\":[\"perfectionist check, people pleasers check... really conscientious, hard driving\",\"holding the emotions... it\u0027s kind of like a pressure cooker\",\"people who get cfs are really nice people but they hold in emotions\"]},{\"slug\":\"importance-of-emotional-processing\",\"name\":\"Acknowledging and processing emotions as key to 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conversation i got up and ran around the block like i had not ran in thirteen years\"]}]}",
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{
"description": "Participant describes a traumatic sexual assault and subsequent intense physical illness (urinary tract infection during long flight) that triggered sudden, severe exhaustion and ME/CFS symptoms such as insomnia, brain fog, and digestive issues lasting for years.",
"name": "Trauma leading to sudden health crisis and exhaustion",
"quotes": [
"i was sexually assaulted and that led to a really grueling urinary tract infection... whole system just kind of blacked out... i just went totally kaput i felt like i had the flu twenty four seven... i felt like i couldn\u0027t remember the name of... digestive issues... hot flashes and pre menopausal symptoms even though i was so young"
],
"slug": "trauma-led-health-crisis"
},
{
"description": "Upon receiving the chronic fatigue syndrome diagnosis, the participant experienced a mix of relief for having an explanation and devastating fear, likening the prognosis to a death or life sentence with no cure and ongoing suffering.",
"name": "Fear and uncertainty following chronic fatigue syndrome diagnosis",
"quotes": [
"you know i was so scared... i remember bawling... it was such a death sentence but in a way a life sentence that i was given that i would have to live with for years",
"on the one hand i was relieved to have a diagnosis... on the other hand it was really devastating... a natural path doctor said there\u0027s no cure"
],
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"name": "Resentment towards restrictive diets imposed in treatment",
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"it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating",
"i felt like it was being done to me... actually he said you know what i think that\u0027s perpetuating the trauma",
"there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing"
],
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"name": "Regaining personal agency and control in healing journey",
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"at some point i have to regain my agency and my power and my collaboration in my healing",
"i started realizing with diet and everything else... otherwise i was resenting it",
"someone sees me and i didn\u0027t even know that\u0027s how i felt"
],
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{
"description": "Despite ongoing severe physical symptoms, participant describes achieving a mental state of peace and nonresistance through meditation and spiritual connection, observing symptoms without emotional struggle, which aided emotional coping and eventual recovery progress.",
"name": "Experiencing mental peace while symptoms persist",
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"there was this internal state of nonresistance or peace... and it really wasn\u0027t something i tried to do... it just kind of happened",
"i was kind of watching the symptoms but felt peace",
"i really started meditating and practicing yoga and that sense of spiritual connection really helped"
],
"slug": "mental-peace-despite-physical-symptoms"
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{
"description": "Learning that symptoms are perpetuated by brain and nervous system\u0027s stress response and not directly by viruses or physical damage gave participant hope and understanding, shifting from feeling helpless to empowered to calm the nervous system.",
"name": "Adopting brain and nervous system explanation for ME/CFS symptoms",
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"she explained all these viruses were suppressing the immune system... but it was how her brain and nervous system were processing stress",
"she said \u0027you\u0027re not sick, you\u0027re stressed, your system is stuck in this pattern\u0027",
"the brain generates pain... fatigue because it senses danger... danger can be psychological as well as physical"
],
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{
"description": "Participant emphasizes that adopting self-compassion and kindness toward oneself reduces self-criticism that otherwise triggers stress and perpetuates symptoms, enabling more effective emotional regulation and eventual physical improvement.",
"name": "Cultivating self-compassion to manage symptoms and aid recovery",
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"self criticism actually does activate the danger alarm in the brain... so it can feed into symptoms",
"i just talk to myself in a compassionate way... i\u0027m so sorry... what do you want or need right now",
"to realize having compassion on ourselves is helpful and can soften the blow"
],
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"description": "Perfectionism, people-pleasing, conscientiousness and holding in emotions were discussed as personality traits common in those with ME/CFS, contributing to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.",
"name": "Role of personality traits like perfectionism in illness experience",
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"perfectionist check, people pleasers check... really conscientious, hard driving",
"holding the emotions... it\u0027s kind of like a pressure cooker",
"people who get cfs are really nice people but they hold in emotions"
],
"slug": "impact-of-personality-on-symptom-perpetuation"
},
{
"description": "Participant shares therapeutic practices like journaling and psychotherapy that helped them express anger, grief, and trauma, releasing emotional pressure that contributed to nervous system hypervigilance and symptom worsening.",
"name": "Acknowledging and processing emotions as key to recovery",
"quotes": [
"some psychotherapy was helpful... talk through griefs",
"i did some journaling... just to get out frustration i was too nice to say to anyone",
"journaling your anger... bottled up anger can be very harmful"
],
"slug": "importance-of-emotional-processing"
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{
"description": "Talking with someone who truly understood the illness experience and explained the brain-based mechanism provided a critical moment of validation and hope, leading to a spontaneous increase in energy and belief in recovery.",
"name": "Finding validation and hope through empathetic connection",
"quotes": [
"she cared a lot... spent three hours on the phone with me",
"i felt like i finally heard the truth... it gave me hope",
"after that conversation i got up and ran around the block like i had not ran in thirteen years"
],
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},
"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for 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"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. 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Be concise. \n\n\u003ctext\u003e\nSPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n\u003c/text\u003e\n\n--\n\ncodes=[Code(slug=\u0027trauma-led-health-crisis\u0027, name=\u0027Trauma leading to sudden health crisis and exhaustion\u0027, description=\u0027Participant describes a traumatic sexual assault and subsequent intense physical illness (urinary tract infection during long flight) that triggered sudden, severe exhaustion and ME/CFS symptoms such as insomnia, brain fog, and digestive issues lasting for years.\u0027, quotes=[\"i was sexually assaulted and that led to a really grueling urinary tract infection... whole system just kind of blacked out... i just went totally kaput i felt like i had the flu twenty four seven... i felt like i couldn\u0027t remember the name of... digestive issues... hot flashes and pre menopausal symptoms even though i was so young\"]), Code(slug=\u0027fear-and-uncertainty-after-diagnosis\u0027, name=\u0027Fear and uncertainty following chronic fatigue syndrome diagnosis\u0027, description=\u0027Upon receiving the chronic fatigue syndrome diagnosis, the participant experienced a mix of relief for having an explanation and devastating fear, likening the prognosis to a death or life sentence with no cure and ongoing suffering.\u0027, quotes=[\u0027you know i was so scared... i remember bawling... it was such a death sentence but in a way a life sentence that i was given that i would have to live with for years\u0027, \"on the one hand i was relieved to have a diagnosis... on the other hand it was really devastating... a natural path doctor said there\u0027s no cure\"]), Code(slug=\u0027resentment-towards-prescribed-diets\u0027, name=\u0027Resentment towards restrictive diets imposed in treatment\u0027, description=\u0027The participant describes feeling misery and resentment towards elimination diets (gluten-free, sugar-free, dairy-free) and restrictions imposed by medical and natural health practitioners that were not collaboratively chosen and felt imposed rather than empowering.\u0027, quotes=[\"it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating\", \"i felt like it was being done to me... actually he said you know what i think that\u0027s perpetuating the trauma\", \"there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing\"]), Code(slug=\u0027regaining-agency-in-healing\u0027, name=\u0027Regaining personal agency and control in healing journey\u0027, description=\u0027Participant highlights the importance of reclaiming personal power and actively collaborating in their healing process, as opposed to passively following medical instructions, which increased resentment and hindered healing progress.\u0027, quotes=[\u0027at some point i have to regain my agency and my power and my collaboration in my healing\u0027, \u0027i started realizing with diet and everything else... otherwise i was resenting it\u0027, \"someone sees me and i didn\u0027t even know that\u0027s how i felt\"]), Code(slug=\u0027mental-peace-despite-physical-symptoms\u0027, name=\u0027Experiencing mental peace while symptoms persist\u0027, description=\u0027Despite ongoing severe physical symptoms, participant describes achieving a mental state of peace and nonresistance through meditation and spiritual connection, observing symptoms without emotional struggle, which aided emotional coping and eventual recovery progress.\u0027, quotes=[\"there was this internal state of nonresistance or peace... and it really wasn\u0027t something i tried to do... it just kind of happened\", \u0027i was kind of watching the symptoms but felt peace\u0027, \u0027i really started meditating and practicing yoga and that sense of spiritual connection really helped\u0027]), Code(slug=\u0027brain-based-explanation-for-fatigue-symptoms\u0027, name=\u0027Adopting brain and nervous system explanation for ME/CFS symptoms\u0027, description=\"Learning that symptoms are perpetuated by brain and nervous system\u0027s stress response and not directly by viruses or physical damage gave participant hope and understanding, shifting from feeling helpless to empowered to calm the nervous system.\", quotes=[\u0027she explained all these viruses were suppressing the immune system... but it was how her brain and nervous system were processing stress\u0027, \"she said \u0027you\u0027re not sick, you\u0027re stressed, your system is stuck in this pattern\u0027\", \u0027the brain generates pain... fatigue because it senses danger... danger can be psychological as well as physical\u0027]), Code(slug=\u0027self-compassion-supporting-recovery\u0027, name=\u0027Cultivating self-compassion to manage symptoms and aid recovery\u0027, description=\u0027Participant emphasizes that adopting self-compassion and kindness toward oneself reduces self-criticism that otherwise triggers stress and perpetuates symptoms, enabling more effective emotional regulation and eventual physical improvement.\u0027, quotes=[\u0027self criticism actually does activate the danger alarm in the brain... so it can feed into symptoms\u0027, \"i just talk to myself in a compassionate way... i\u0027m so sorry... what do you want or need right now\", \u0027to realize having compassion on ourselves is helpful and can soften the blow\u0027]), Code(slug=\u0027impact-of-personality-on-symptom-perpetuation\u0027, name=\u0027Role of personality traits like perfectionism in illness experience\u0027, description=\u0027Perfectionism, people-pleasing, conscientiousness and holding in emotions were discussed as personality traits common in those with ME/CFS, contributing to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.\u0027, quotes=[\u0027perfectionist check, people pleasers check... really conscientious, hard driving\u0027, \"holding the emotions... it\u0027s kind of like a pressure cooker\", \u0027people who get cfs are really nice people but they hold in emotions\u0027]), Code(slug=\u0027importance-of-emotional-processing\u0027, name=\u0027Acknowledging and processing emotions as key to recovery\u0027, description=\u0027Participant shares therapeutic practices like journaling and psychotherapy that helped them express anger, grief, and trauma, releasing emotional pressure that contributed to nervous system hypervigilance and symptom worsening.\u0027, quotes=[\u0027some psychotherapy was helpful... talk through griefs\u0027, \u0027i did some journaling... just to get out frustration i was too nice to say to anyone\u0027, \u0027journaling your anger... bottled up anger can be very harmful\u0027]), Code(slug=\u0027validation-and-hope-from-connection\u0027, name=\u0027Finding validation and hope through empathetic connection\u0027, description=\u0027Talking with someone who truly understood the illness experience and explained the brain-based mechanism provided a critical moment of validation and hope, leading to a spontaneous increase in energy and belief in recovery.\u0027, quotes=[\u0027she cared a lot... spent three hours on the phone with me\u0027, \u0027i felt like i finally heard the truth... it gave me hope\u0027, \u0027after that conversation i got up and ran around the block like i had not ran in thirteen years\u0027])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \u0027theme\u0027 is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \u0027share\u0027 codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\u0027s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clich\u00e9s, generalizations. Avoid the word \u0027Navigating\u0027 in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json"
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Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i\u0027ve learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today\u0027s interview is an example of just that hi everyone i\u0027m ralan if you\u0027re new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i\u0027m super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let\u0027s dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn\u0027t have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i\u0027ve had jason on the channel before that\u0027s jason mctiernan\u0027s program correct i can thrive yeah i\u0027ve 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many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we\u0027re in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you\u0027re even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i\u0027m training for a full marathon with some of my friends and before i don\u0027t think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it\u0027s a horrible thing to go through but thankfully there\u0027s a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more 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us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you\u0027ll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there\u0027s online videos that he\u0027ll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great and it\u0027s just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he\u0027d give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program\u0027s working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there\u0027s still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that\u0027s a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we\u0027re going to keep going to keep having symptoms and different things in our lives to let us know what\u0027s going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i\u0027ve got the tools i know what to do i can get past it yeah so for you have anything that you\u0027d want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you\u0027d say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you\u0027re feeling even if you haven\u0027t found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they\u0027re facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he\u0027ll always tell you that you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been like you\u0027re on the right path to recovery\n\nSPEAKER_00: amazing well i\u0027m so so happy for you kelly this is incredible i\u0027m happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it\u0027s always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don\u0027t want people watching to feel discouraged if their recovery doesn\u0027t happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you\u0027re interested in learning more about jason mctiernan and his program i can thrive we\u0027ll put a video here to help you get a better sense of what that\u0027s all about so yeah thank you again kelly thank you to those of 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Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i\u0027ve learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today\u0027s interview is an example of just that hi everyone i\u0027m ralan if you\u0027re new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i\u0027m super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let\u0027s dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn\u0027t have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i\u0027ve had jason on the channel before that\u0027s jason mctiernan\u0027s program correct i can thrive yeah i\u0027ve interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he\u0027s a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you\u0027re going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i\u0027m by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we\u0027re in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you\u0027re even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i\u0027m training for a full marathon with some of my friends and before i don\u0027t think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it\u0027s a horrible thing to go through but thankfully there\u0027s a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn\u0027t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that\u0027s more of a journey rather than oh i\u0027m stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it\u0027s meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you\u0027re going through the program if someone\u0027s watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you\u0027ll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there\u0027s online videos that he\u0027ll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great and it\u0027s just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he\u0027d give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program\u0027s working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there\u0027s still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that\u0027s a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we\u0027re going to keep going to keep having symptoms and different things in our lives to let us know what\u0027s going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i\u0027ve got the tools i know what to do i can get past it yeah so for you have anything that you\u0027d want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you\u0027d say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you\u0027re feeling even if you haven\u0027t found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they\u0027re facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he\u0027ll always tell you that you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been like you\u0027re on the right path to recovery\n\nSPEAKER_00: amazing well i\u0027m so so happy for you kelly this is incredible i\u0027m happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it\u0027s always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don\u0027t want people watching to feel discouraged if their recovery doesn\u0027t happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you\u0027re interested in learning more about jason mctiernan and his program i can thrive we\u0027ll put a video here to help you get a better sense of what that\u0027s all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n\u003c/text\u003e\n\n--\n\ncodes=[Code(slug=\u0027energy-loss-and-fatigue-in-cfs-long-covid\u0027, name=\u0027Energy loss and fatigue reducing daily activity\u0027, description=\u0027Participant experienced a noticeable drop in energy and motivation to engage in usual activities, leading to extended periods of rest and physical symptoms like canker sores, reflecting the debilitating impact of CFS/long COVID on daily life.\u0027, quotes=[\"...i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities...\", \u0027...laying in bed i would get these canker sores and just overall not feeling the best\u0027]), Code(slug=\u0027frustration-of-inconclusive-medical-tests\u0027, name=\u0027Frustration from inconclusive medical investigations\u0027, description=\u0027Participant felt frustration and uncertainty when medical tests showed normal results despite ongoing symptoms, leading to self-doubt about the origin of symptoms and exploration of mental health explanations.\u0027, quotes=[\u0027...i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work...\u0027, \u0027...thought maybe it was something mentally that was causing this\u0027]), Code(slug=\u0027initial-skepticism-of-brain-retraining-technique\u0027, name=\u0027Initial skepticism towards brain retraining techniques\u0027, description=\u0027Participant was initially doubtful about the efficacy of brain retraining and hypnosis-related methods but committed to the program and found these techniques effective for symptom management and anxiety reduction.\u0027, quotes=[\u0027...in the beginning i was a little skeptical because the program does have like a hypnosis type of effect...\u0027, \u0027...once i really committed to learning the program it really made a difference\u0027]), Code(slug=\u0027importance-of-mental-stamina-for-active-recovery\u0027, name=\u0027Importance of mental stamina for physical activity recovery\u0027, description=\u0027Participant emphasized the growth in mental stamina and positive mindset as critical to progressing from basic functioning to running a 10k and training for a marathon, showing the mental aspects integral to physical recovery.\u0027, quotes=[\"...before i don\u0027t think i would have had the mental stamina to do that...\", \u0027...now i just have that positive affirmations and changing the way of my mindset from fix to growth...\u0027]), Code(slug=\u0027valuing-supportive-encouragement-in-recovery\u0027, name=\u0027Valuing supportive and personal encouragement during recovery\u0027, description=\u0027Participant highlighted how personalized encouragement and belief from program coach Jason boosted motivation and aided recovery, illustrating the importance of personal connection in healing journeys.\u0027, quotes=[\"...he would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great...\", \"...it\u0027s just great having someone who believes in you that much...\"]), Code(slug=\u0027developing-empowering-self-statements\u0027, name=\u0027Developing empowering self-statements to combat anxiety\u0027, description=\u0027Participant learned to replace disempowering anxiety statements with growth-oriented affirmations, facilitating a more positive and hopeful mindset conducive to ongoing recovery and emotional resilience.\u0027, quotes=[\"...i didn\u0027t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better...\", \"...that\u0027s more of a journey rather than oh i\u0027m stuck at this state of anxiety...\"]), Code(slug=\u0027recognizing-the-journey-of-recovery-not-a-fix\u0027, name=\u0027Recognizing recovery as a journey, not a fixed state\u0027, description=\u0027Participant expressed understanding that recovery involves ongoing management rather than complete absence of symptoms, using tools to address fluctuations and maintain progress without fear.\u0027, quotes=[\"...i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools...\", \"...you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been...\"])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \u0027theme\u0027 is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \u0027share\u0027 codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\u0027s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clich\u00e9s, generalizations. Avoid the word \u0027Navigating\u0027 in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json"
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"...sometimes it feels like people think it\u2019s all in your head...",
"...I just want doctors and my family to really understand what I\u2019m going through...",
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],
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"name": "Need to regain physical energy and return to normal function",
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"...I keep hoping for a cure that will help me move on with my life..."
],
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"name": "Coping with changes to identity and sense of self",
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"...I don\u2019t recognize the person I am now compared to before...",
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"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nTranscripts from https://www.youtube.com/c/RaelanAgle\n8 patients who have recovered from CFS/ME and Long COVID talk about their illness.\n\u003c/text\u003e\nAlways use the tools/JSON response.\n\n```json"
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"description": "There is a poignant longing among participants to regain lost physical energy and return to activities they once enjoyed, such as jogging, playing with children, and routine tasks. The overwhelming fatigue makes even simple tasks difficult, and participants express a strong need to feel like themselves by restoring their physical function and vitality.",
"name": "Yearning to recover physical strength and resume normal activities"
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],
"description": "Participants describe the emotional toll of trying many treatments without success, expressing heartbreak and disappointment. They maintain hope for an effective cure or therapy that will relieve symptoms, stop the pain and fatigue, and allow them to move forward with life beyond their illness.",
"name": "Persistent search for treatments that bring relief and hope for cure"
},
{
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],
"description": "This theme reflects participants\u0027 internal conflict as they mourn their healthy pre-illness identity and grapple with new limitations that alter their roles and self-perception. They speak to the difficulty of accepting these changes and feeling like they have lost their former selves amid the chronic illness experience.",
"name": "Struggling with sense of self and identity after illness onset"
}
]
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Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nTranscripts from https://www.youtube.com/c/RaelanAgle\n8 patients who have recovered from CFS/ME and Long COVID talk about their illness.\n\u003c/text\u003e\n\n--\n\ncodes=[Code(slug=\u0027long-covid-frustration-and-isolation\u0027, name=\u0027Feeling frustrated and isolated due to long COVID limitations\u0027, description=\u0027Participants express frustration with the ongoing symptoms and limitations imposed by long COVID, highlighting feelings of isolation and disconnection from their former healthy selves and social life. This includes struggles with physical and cognitive impairments and the emotional toll of not being understood.\u0027, quotes=[\u0027...I just feel so drained all the time, like I used to be so active and now I can barely manage a short walk...\u0027, \"...people don\u0027t see the struggle you go through every day, it makes you feel very alone...\", \u0027...it\u2019s frustrating because you want to get better but the symptoms just keep dragging you down...\u0027]), Code(slug=\u0027desire-for-understanding-and-validation\u0027, name=\u0027Desire for understanding and validation from others\u0027, description=\u0027Participants highlight a strong need for others to acknowledge and believe their experience with long COVID and ME/CFS, as they often face skepticism or misunderstanding. This recognition is crucial for emotional support and reducing the stigma they encounter.\u0027, quotes=[\u0027...sometimes it feels like people think it\u2019s all in your head...\u0027, \u0027...I just want doctors and my family to really understand what I\u2019m going through...\u0027, \u0027...validation would mean the world because it proves that I\u2019m not making this up...\u0027]), Code(slug=\u0027need-to-regain-physical-energy-and-function\u0027, name=\u0027Need to regain physical energy and return to normal function\u0027, description=\u0027A consistent desire to regain lost physical energy and resume activities that were previously routine is expressed. Participants describe longing to be able to do simple physical tasks, exercise, and engage in social and work activities without debilitating fatigue.\u0027, quotes=[\u0027...if I could just get some of my energy back, I\u2019d feel like myself again...\u0027, \u0027...I miss being able to just go for a jog or play with my kids without getting exhausted...\u0027, \u0027...the fatigue is so overwhelming that even making a meal feels like climbing a mountain...\u0027]), Code(slug=\u0027search-for-effective-treatment-and-cures\u0027, name=\u0027Search for effective treatment and cures for symptom relief\u0027, description=\u0027Participants discuss their ongoing search for treatments or interventions that can bring relief from symptoms or lead to recovery. This includes frustration at the lack of clear treatments and the trial and error of various therapies.\u0027, quotes=[\u0027...I\u2019ve tried so many treatments, but nothing seems to really work...\u0027, \u0027...it\u2019s heartbreaking to not find anything that helps the pain or fatigue...\u0027, \u0027...I keep hoping for a cure that will help me move on with my life...\u0027]), Code(slug=\u0027coping-with-identity-changes\u0027, name=\u0027Coping with changes to identity and sense of self\u0027, description=\u0027Participants reflect on the impact the illness has had on their identity and sense of self, expressing a mourning for their previous healthy self and struggling with the new limitations and changed roles in relationships and life.\u0027, quotes=[\u0027...I don\u2019t recognize the person I am now compared to before...\u0027, \u0027...it\u2019s hard to accept that I can\u2019t do what I used to do...\u0027, \u0027...sometimes I feel like I\u2019ve lost who I was...\u0027])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \u0027theme\u0027 is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \u0027share\u0027 codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\u0027s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clich\u00e9s, generalizations. Avoid the word \u0027Navigating\u0027 in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json"
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{
"description": "Participants describe anger not as a psychological issue but as a physiological survival response generated by fight or flight sensations in the body. This intense physiological arousal leads to chronic pain and symptoms that are deeply wired in their nervous system, making them uncontrollable by conscious mind alone.",
"name": "Anger as fight or flight physiology driving chronic pain",
"quotes": [
"the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight",
"anger and anxiety are physiological survival responses that we have no control over zero",
"anger and anxiety are gifts i mean how you survive without anger and anxiety"
],
"slug": "anger-fight-flight-physiology-chronic-pain"
},
{
"description": "Chronic pain is explained as an embedded memory in the brain\u0027s pain circuits that cannot be erased. Participants feel their pain persists because the brain memorizes the pain experience permanently, similar to phantom limb pain. Fighting the pain reinforces these circuits, while acceptance and new living patterns enable transcendence and symptom reduction.",
"name": "Chronic pain as embedded memory in neuroplastic pain circuits",
"quotes": [
"the pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone",
"the more you try to fight it and solve it the more you reinforce it",
"you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain"
],
"slug": "chronic-pain-neuroplasticity-memory-pain-circuits"
},
{
"description": "Participants express how the unconscious brain processes millions of bits of information per second to keep them alive, without needing the conscious brain. Chronic symptoms arise from unconscious physiological threat states that the conscious brain struggles to control, explaining difficulty in managing chronic illness through conscious effort alone.",
"name": "Unconscious brain drives survival responses and chronic symptoms",
"quotes": [
"the unconscious brain keeps you alive we do not need conscious brain to stay alive",
"the unconscious brain is eleven million bits of your patient per second the conscious brain is forty",
"you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes"
],
"slug": "role-of-unconscious-brain-in-survival-and-pain"
},
{
"description": "Participants describe a shift from actively trying to fix or fight their pain towards letting go and accepting it as key to healing. This change in relationship towards pain reduces reinforcement of pain circuits, enables separation from pain, and supports creating new, pain-free neural pathways through living life on their own terms.",
"name": "Letting go of fighting pain as crucial to healing process",
"quotes": [
"the hardest part of this project by far is people can\u0027t help but try to fix themselves",
"you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain",
"the pain she or you\u0027re here as you start getting on with your life the way you want to your terms that\u0027s the solution"
],
"slug": "letting-go-fighting-pain-key-to-healing"
},
{
"description": "Participants reveal that chronic symptoms, including pain, anxiety, depression and other diseases, stem from sustained threat physiology involving hyperactive nervous system responses and inflammation. This state breaks down the body over time and maintains symptoms, emphasizing the need to calm the physiology rather than solely treat symptoms.",
"name": "Threat physiology underlies chronic mental and physical symptoms",
"quotes": [
"every chronic disease with few exceptions are related to chronic stress",
"the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really",
"chronic fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress"
],
"slug": "threat-physiology-explains-chronic-symptoms"
},
{
"description": "Participants highlight the importance of separating their identity from negative intrusive thoughts and repetitive thought patterns that fuel anxiety and pain. Techniques like expressive writing, mindfulness and cognitive behavioral therapy help create this separation, reducing the physiological arousal that these thoughts cause.",
"name": "Separating oneself from negative and repetitive thoughts",
"quotes": [
"separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play",
"if you work with that much so that separates you from the thoughts not solving them to say thought separation process",
"by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing"
],
"slug": "separation-from-negative-thoughts-in-pain"
},
{
"description": "Participants emphasize nurturing joy through positive experiences, relationships, and mindset as essential for healing chronic pain and symptoms. Joy helps build new neural pathways, counterbalances threat physiology, and supports a flourishing life beyond pain rather than solely focusing on fixing negative symptoms.",
"name": "Nurturing joy as a vital part of healing journey",
"quotes": [
"the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible",
"you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing",
"you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs"
],
"slug": "nurturing-joy-for-chronic-pain-healing"
},
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"description": "Participants discuss sleep, diet, and exercise as foundational pillars to calm the nervous system and support healing. Lack of sleep contributes directly to chronic pain development, and improving these areas helps regulate physiology, reduce inflammation, and promote regeneration, forming an essential part of recovery processes.",
"name": "Importance of sleep diet and exercise for calming nervous system",
"quotes": [
"if you address sleep is number one people weren\u0027t sleeping",
"lack of sleep actually causes chronicle back pain not the way around",
"sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system"
],
"slug": "importance-of-sleep-diet-exercise-in-nervous-system-calm"
},
{
"description": "Participants relate that physiological responses in the nervous system vastly overpower the conscious brain\u2019s ability to control thoughts or symptoms. Fight or flight states inhibit neocortex functions and cognitive thinking, resulting in automatic reactions and making conscious efforts insufficient to manage symptoms alone.",
"name": "Physiology\u0027s dominance over conscious brain in symptom experience",
"quotes": [
"it\u0027s about half a million times stronger than your conscious brain",
"when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work",
"by the time you think about it so let\u0027s have a thoughts for second"
],
"slug": "role-of-physiology-over-conscious-control"
},
{
"description": "Participants express that skepticism is a natural and valid initial stance for people learning this approach. Encouraging embracing skepticism helps people start the healing journey by connecting with their own experience rather than blind belief, promoting curiosity and gradual learning to shift physiology and symptoms.",
"name": "Using skepticism as a starting point to engage in healing",
"quotes": [
"i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said",
"the key is connect to what\u0027s in there which is skepticism",
"connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change"
],
"slug": "skepticism-as-starting-point-for-healing-engagement"
}
]
},
"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of 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"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. 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Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n\u003c/text\u003e\n\n--\n\ncodes=[Code(slug=\u0027anger-fight-flight-physiology-chronic-pain\u0027, name=\u0027Anger as fight or flight physiology driving chronic pain\u0027, description=\u0027Participants describe anger not as a psychological issue but as a physiological survival response generated by fight or flight sensations in the body. This intense physiological arousal leads to chronic pain and symptoms that are deeply wired in their nervous system, making them uncontrollable by conscious mind alone.\u0027, quotes=[\"the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight\", \u0027anger and anxiety are physiological survival responses that we have no control over zero\u0027, \u0027anger and anxiety are gifts i mean how you survive without anger and anxiety\u0027]), Code(slug=\u0027chronic-pain-neuroplasticity-memory-pain-circuits\u0027, name=\u0027Chronic pain as embedded memory in neuroplastic pain circuits\u0027, description=\"Chronic pain is explained as an embedded memory in the brain\u0027s pain circuits that cannot be erased. Participants feel their pain persists because the brain memorizes the pain experience permanently, similar to phantom limb pain. Fighting the pain reinforces these circuits, while acceptance and new living patterns enable transcendence and symptom reduction.\", quotes=[\u0027the pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone\u0027, \u0027the more you try to fight it and solve it the more you reinforce it\u0027, \"you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain\"]), Code(slug=\u0027role-of-unconscious-brain-in-survival-and-pain\u0027, name=\u0027Unconscious brain drives survival responses and chronic symptoms\u0027, description=\u0027Participants express how the unconscious brain processes millions of bits of information per second to keep them alive, without needing the conscious brain. Chronic symptoms arise from unconscious physiological threat states that the conscious brain struggles to control, explaining difficulty in managing chronic illness through conscious effort alone.\u0027, quotes=[\u0027the unconscious brain keeps you alive we do not need conscious brain to stay alive\u0027, \u0027the unconscious brain is eleven million bits of your patient per second the conscious brain is forty\u0027, \"you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes\"]), Code(slug=\u0027letting-go-fighting-pain-key-to-healing\u0027, name=\u0027Letting go of fighting pain as crucial to healing process\u0027, description=\u0027Participants describe a shift from actively trying to fix or fight their pain towards letting go and accepting it as key to healing. This change in relationship towards pain reduces reinforcement of pain circuits, enables separation from pain, and supports creating new, pain-free neural pathways through living life on their own terms.\u0027, quotes=[\"the hardest part of this project by far is people can\u0027t help but try to fix themselves\", \u0027you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain\u0027, \"the pain she or you\u0027re here as you start getting on with your life the way you want to your terms that\u0027s the solution\"]), Code(slug=\u0027threat-physiology-explains-chronic-symptoms\u0027, name=\u0027Threat physiology underlies chronic mental and physical symptoms\u0027, description=\u0027Participants reveal that chronic symptoms, including pain, anxiety, depression and other diseases, stem from sustained threat physiology involving hyperactive nervous system responses and inflammation. This state breaks down the body over time and maintains symptoms, emphasizing the need to calm the physiology rather than solely treat symptoms.\u0027, quotes=[\u0027every chronic disease with few exceptions are related to chronic stress\u0027, \u0027the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really\u0027, \u0027chronic fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress\u0027]), Code(slug=\u0027separation-from-negative-thoughts-in-pain\u0027, name=\u0027Separating oneself from negative and repetitive thoughts\u0027, description=\u0027Participants highlight the importance of separating their identity from negative intrusive thoughts and repetitive thought patterns that fuel anxiety and pain. Techniques like expressive writing, mindfulness and cognitive behavioral therapy help create this separation, reducing the physiological arousal that these thoughts cause.\u0027, quotes=[\"separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play\", \u0027if you work with that much so that separates you from the thoughts not solving them to say thought separation process\u0027, \u0027by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing\u0027]), Code(slug=\u0027nurturing-joy-for-chronic-pain-healing\u0027, name=\u0027Nurturing joy as a vital part of healing journey\u0027, description=\u0027Participants emphasize nurturing joy through positive experiences, relationships, and mindset as essential for healing chronic pain and symptoms. Joy helps build new neural pathways, counterbalances threat physiology, and supports a flourishing life beyond pain rather than solely focusing on fixing negative symptoms.\u0027, quotes=[\"the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible\", \"you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing\", \"you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs\"]), Code(slug=\u0027importance-of-sleep-diet-exercise-in-nervous-system-calm\u0027, name=\u0027Importance of sleep diet and exercise for calming nervous system\u0027, description=\u0027Participants discuss sleep, diet, and exercise as foundational pillars to calm the nervous system and support healing. Lack of sleep contributes directly to chronic pain development, and improving these areas helps regulate physiology, reduce inflammation, and promote regeneration, forming an essential part of recovery processes.\u0027, quotes=[\"if you address sleep is number one people weren\u0027t sleeping\", \u0027lack of sleep actually causes chronicle back pain not the way around\u0027, \u0027sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system\u0027]), Code(slug=\u0027role-of-physiology-over-conscious-control\u0027, name=\"Physiology\u0027s dominance over conscious brain in symptom experience\", description=\u0027Participants relate that physiological responses in the nervous system vastly overpower the conscious brain\u2019s ability to control thoughts or symptoms. Fight or flight states inhibit neocortex functions and cognitive thinking, resulting in automatic reactions and making conscious efforts insufficient to manage symptoms alone.\u0027, quotes=[\"it\u0027s about half a million times stronger than your conscious brain\", \"when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work\", \"by the time you think about it so let\u0027s have a thoughts for second\"]), Code(slug=\u0027skepticism-as-starting-point-for-healing-engagement\u0027, name=\u0027Using skepticism as a starting point to engage in healing\u0027, description=\u0027Participants express that skepticism is a natural and valid initial stance for people learning this approach. Encouraging embracing skepticism helps people start the healing journey by connecting with their own experience rather than blind belief, promoting curiosity and gradual learning to shift physiology and symptoms.\u0027, quotes=[\"i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said\", \"the key is connect to what\u0027s in there which is skepticism\", \u0027connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change\u0027])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \u0027theme\u0027 is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \u0027share\u0027 codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\u0027s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clich\u00e9s, generalizations. Avoid the word \u0027Navigating\u0027 in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json"
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"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n\u003c/text\u003e\nAlways use the tools/JSON response.\n\n```json"
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"prompt": "You are a: Experienced qual researcher\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\nNone\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\nSPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n\u003c/text\u003e\n\n--\n\ncodes=[Code(slug=\u0027book-as-key-to-chronic-pain-recovery\u0027, name=\u0027Book as key to chronic pain recovery approach\u0027, description=\u0027The participant found a specific book by Dr. John Sarno pivotal in understanding and recovering from chronic pain and multiple other health issues. This self-help resource resonated deeply with their symptoms and personality, leading to significant healing and influencing their therapeutic career.\u0027, quotes=[\u0027i found a book by a guy named john sono... my back pain was gone within a few months ... a lot of other health problems i had suffered with for years went away\u0027, \u0027sorrow said that a lot of people could get better just by reading the book\u0027, \u0027the symptoms right the fact that i had always had something really since i was a kid ... it was really resonating\u0027, \u0027the personality characteristics... were so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions\u0027]), Code(slug=\u0027emotion-focused-therapy-for-pain\u0027, name=\u0027Emotion-focused therapy as core to pain recovery process\u0027, description=\"Emotion-focused therapy, particularly Intensive Short-Term Dynamic Psychotherapy (ISTDP), is central to the participant\u0027s approach to chronic pain recovery. It focuses on safely accessing and processing suppressed emotions, especially anger and rage, which manifest as physical pain.\", quotes=[\u0027the core of the intervention is this emotion focused approach... all emotions are healthy... we learn to disconnect from these emotions\u0027, \u0027we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain\u0027, \u0027brain pain research shows chronic pain lights up the amygdala which is responsible for emotions anger rage\u0027, \u0027ISTDP therapy allows patients to notice their bodily tension which is often anxiety about feeling anger or rage, helping them process these emotions\u0027]), Code(slug=\u0027barriers-to-therapy-engagement-and-trust\u0027, name=\u0027Barriers to engaging with emotion-focused therapy include fear and trust issues\u0027, description=\u0027The participant acknowledges that many patients struggle with engaging in ISTDP therapy due to fears, defenses, and trust issues. Therapy requires gradual emotional exposure at a tolerable pace to avoid setbacks, with some patients needing more time and support to lower their defenses and benefit.\u0027, quotes=[\"some folks can work through the process very quickly... but others it\u0027s more complicated and harder\", \u0027i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions\u0027, \u0027ISTDP is incredibly difficult but supportive... it requires building emotional threshold gradually\u0027, \u0027some people resist because dealing with emotions is hard work, their symptoms can flare up as they engage emotionally\u0027]), Code(slug=\u0027transformation-in-professional-acceptance\u0027, name=\u0027Growing acceptance of emotion-focused therapy among medical professionals\u0027, description=\"Over time, there has been significant progress in the medical and professional community\u0027s acceptance of emotion-focused therapy for chronic pain, with increased training and referrals. Despite previous stigma, doctors now recognize the scientific support and therapeutic benefits, leading to more integration in treatment.\", quotes=[\u0027most of the folks that i work with come to me because they know and understand and accept this\u0027, \"i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work\", \u0027medical schools are starting to have pain curriculum now and look towards scientifically supported approaches\u0027, \u0027doctors call me to see patients because there is a growing recognition of this approach\u0027]), Code(slug=\u0027mindset-shift-needed-for-therapy-acceptance\u0027, name=\u0027Mindset shift required for accepting therapy as part of recovery\u0027, description=\u0027Many patients initially see therapy only as coping rather than a true recovery pathway. The participant highlights the need for a paradigm shift from viewing mental health as separate to understanding physical and emotional health integration to accept emotion-focused therapy as a vital part of healing chronic pain.\u0027, quotes=[\u0027most of us think of our mental health and physical health as two separate things\u0027, \"addressing your mental health stuff is a nice to have when i was really sick i started going into therapy but it wasn\u0027t to make myself get better it was just to help me cope\", \u0027this is such a change in mindset and our understanding to see this as part of their path to getting better\u0027]), Code(slug=\u0027emotions-understood-as-physical-pain-source\u0027, name=\u0027Understanding emotions as the source of physical pain\u0027, description=\u0027The participant explains how emotions, especially those deemed unacceptable or dangerous, are converted into physical symptoms like chronic pain, supported by MRI studies. This understanding validates the psychological origins of pain and the need to address emotions therapeutically rather than focusing solely on structural damage.\u0027, quotes=[\u0027sometimes we develop strategies to ward off these uncomfortable or dangerous emotions and for chronic pain patients it tends to be physical pain\u0027, \u0027MRI research supports the process of emotions transforming into physical form\u0027, \u0027chronic pain patients brains light up the amygdala which is responsible for emotions like anger and rage\u0027, \"there\u0027s really no very little relationship between structural changes and the pain that you\u0027re experiencing\"])]\n\n--\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \u0027theme\u0027 is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \u0027share\u0027 codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\u0027s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clich\u00e9s, generalizations. Avoid the word \u0027Navigating\u0027 in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\nAlways use the tools/JSON response.\n\n```json"
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"type": "chatter"
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"temperature": null,
"template_text": "You are a: {{persona}}\n\nYou will code the transcript independently, without using a pre-existing codebook. This is the initial coding stage, where insights will be drawn directly from the text. The results from this stage will determine the subsequent theme generation process.\n\n{{research_question}}\n\nYou are provided text from transcripts of interviews with participants who took part in the study.\n\nIn this stage, you will generate codes. Codes are the foundational units of inductive thematic analysis, capturing significant concepts and ideas from the transcripts. Each code includes a concise name, a meaningful description, and representative quotes from the transcripts.\n\nIn this task, a \u0027code\u0027 should be related to the desires, needs, and meaningful outcomes for participants. Codes pertain to participants. Codes describe the feeling of the participant themselves.\n\nYour goal is to carefully look through the text and identify all codes discussed by the participant exhaustively. Each code should be specific and distinct without overlaps.\n\nIdentify all relevant codes in the text, provide a Name for each code in 8 to 15 words in sentence case.\n\nWrite with concise, concrete details and avoid clich\u00e9s, generalizations.\n\nGive a dense Description of the code in 50 words and direct quotes from the participant for each code. These quotes can consist of multiple excerpts from the text. Use ellipses to shorten quotes as needed.\n\nTry to use the language the participants use when generating the names and descriptions.\n\nUse language like an inductive thematic analysis researcher would do when generating the names and descriptions.\n\nAvoid generalized terms and use specific terms from the quotes when generating code name and description. Be concise. \n\n\u003ctext\u003e\n{{chunks}}\n\u003c/text\u003e\n\n\n[[codes:codes]]\n\nNext is the theme identification stage. Above are initial codes: text that has initial codes with their descriptions and relevant quotes.\n\nYour task now is to group the initial codes into distinct themes based on the initial codes, descriptions, and quotes.\n\nA \u0027theme\u0027 is the wants, needs, meaningful outcomes, and lived experiences of participants.\n\nThemes:\n\n- pertain to participants.\n- describe the feeling of the participants themselves.\n- should be specific and distinct.\n- can relate to multiple codes\n- can \u0027share\u0027 codes with other themes\n\n### Instructions\n\n- Provide a descriptive and specific name of 8 to 15 words for each theme based on the code\u0027s names, quotes and descriptions.\n\n- Write with concise, concrete details and avoid clich\u00e9s, generalizations. Avoid the word \u0027Navigating\u0027 in the theme names.\n\n- Use the language the participants use when generating the theme names and descriptions.\n\n- Write the theme name in sentence case.\n\n- Provide a detailed description of 60 to 80 words for each theme.\n\n- Use the language and specific words of each Quote and Description of codes when generating the name and description for that theme. Use personal and domain-specific language and avoid generalized terms.\n\nAct like an inductive Thematic Analysis researcher would. You will be rewarded if you can complete this effectively.\n\n\nCreate themes from the codes above\n\n[[themes:themes]]",
"type": "Map"
},
{
"inputs": [
"codes_and_themes_per_chunk"
],
"name": "all_codes",
"output": "codes=[Code(slug=\u0027persistent-fatigue-and-energy-drain\u0027, name=\u0027Persistent fatigue and energy drain on standing\u0027, description=\u0027Participant describes extreme exhaustion and a complete drain of energy when trying to stand after lying down, leading to being bedridden for 18 months. This fatigue persisted with partial recovery but never complete, impacting daily functioning for many years.\u0027, quotes=[\"\u0027i was there for the next eighteen months was in bed ... i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely\u0027\", \"\u0027i was able to live a fairly good life but always tired constantly tired\u0027\"]), Code(slug=\u0027overexertion-and-relapse-cycle\u0027, name=\u0027Overexertion leading to relapse and worsening symptoms\u0027, description=\u0027Participant describes a cycle of pushing herself too hard (e.g. walking excessively) which led to picking up viruses and relapse back to debilitating fatigue forcing retirement and severe activity limitations.\u0027, quotes=[\"\u0027then i started overdoing things again i was walking like ten miles every day ... i picked up a couple of viruses ... i woke up ... i just can\u0027t get out of bed i can\u0027t do this again\u0027\", \"\u0027i actually had to retire at that stage and then being retired ... i kept pushing myself pushing myself\u0027\"]), Code(slug=\u0027relentless-pushing-despite-limitations\u0027, name=\u0027Relentless pushing through fatigue despite physical limits\u0027, description=\u0027Despite exhaustion and physical inability to perform basic tasks, participant kept pushing herself to walk and exercise daily, even waking early to get dressed for walking before breakfast, leading to further energy depletion.\u0027, quotes=[\"\u0027i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes ... were in the bathroom ... i just went walking i\u0027d be back by seven eight nine o\u0027clock\u0027\", \"\u0027then i couldn\u0027t really do anything for myself ... i had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else\u0027\"]), Code(slug=\u0027realization-to-accept-lifestyle-changes\u0027, name=\u0027Realization and acceptance of necessary lifestyle changes\u0027, description=\u0027Participant early on did not accept diagnosis fully, maintained denial to an extent, but later realized she needed to make significant lifestyle changes to manage her illness rather than hoping to return to previous activity levels.\u0027, quotes=[\"\u0027i\u0027m not going to give into it but i am going to have to make life changes ... my life is going to have to change from that point of view\u0027\", \"\u0027part of it was just ignorance be part of it\u0027\"]), Code(slug=\u0027brain-retraining-as-a-recovery-path\u0027, name=\u0027Embracing brain retraining as a key to recovery\u0027, description=\"Initial skepticism toward brain retraining shifted to acceptance after understanding it addressed body\u2019s protective response and mental \u0027fight or flight\u0027 mode, leading to participation in program and positive initial results within two weeks.\", quotes=[\"\u0027my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain\u0027\", \"\u0027when he explaining ... your body has switched down some of the genes ... you\u0027re stuck in this fight too much ... it just started making sense\u0027\", \"\u0027i contacted jason and went onto his program because it actually really made sense\u0027\"]), Code(slug=\u0027learning-boundaries-to-manage-energy\u0027, name=\u0027Learning to set boundaries to manage energy and avoid overcommitment\u0027, description=\u0027Participant emphasizes importance of setting personal boundaries like letting phone calls go to voicemail to prevent energy drain and managing social demands, as well as self-monitoring to stop before reaching exhaustion.\u0027, quotes=[\"\u0027if my phone rings i let it go to voicemail so i can deal with it when i want to\u0027\", \"\u0027learning boundaries the hardest for me was learning boundaries\u0027\"]), Code(slug=\u0027difficulty-with-relaxation-and-rest\u0027, name=\u0027Difficulty with relaxation and understanding true rest\u0027, description=\"Participant struggles with relaxation practices like meditation and acknowledges need to retrain herself to understand and accept \u0027real rest\u0027 familiar to healthy individuals but challenging for her to implement consistently.\", quotes=[\"\u0027i\u0027m not good at relaxing ... people say do meditation and this meditation is something i just ... struggled with it\u0027\", \"\u0027now i make myself every day lay down and take a nap or do some meditation ... i\u0027m like real rest\u0027\"]), Code(slug=\u0027frustration-with-misunderstanding-by-others\u0027, name=\u0027Frustration and occasional anger toward others\u2019 misunderstanding of illness\u0027, description=\u0027Participant feels annoyed and flares up when people minimize or misunderstand her illness or recovery, particularly those who never had the illness or who judge her lifestyle choices, emphasizing emotional toll of misunderstanding.\u0027, quotes=[\"\u0027when people say silly things sometimes ... i can flare up\u0027\", \"\u0027i know what i\u0027ve been through ... when somebody minimizes it you can think no\u0027\"]), Code(slug=\u0027maintaining-hope-and-positivity-despite-chronic-illness\u0027, name=\u0027Maintaining hope and positivity despite chronic illness challenges\u0027, description=\u0027Participant highlights her positive and obstinate personality as key factors in her refusal to accept permanent disability and her sustained belief in recovery and improvement despite long-term severe illness.\u0027, quotes=[\"\u0027i\u0027m just a very positive person i think i\u0027m also obstinate\u0027\", \"\u0027never ever felt ... i was almost like in denial\u0027\"]), Code(slug=\u0027self-awareness-to-avoid-overexertion\u0027, name=\u0027Developing self-awareness to avoid overexertion and manage symptoms\u0027, description=\u0027Participant stresses importance of listening to body signals, recognizing triggers, and adjusting activities in timely fashion to prevent relapse and maintain health improvements.\u0027, quotes=[\"\u0027i\u0027ve learnt to listen to myself listen to my body ... work out what my triggers are\u0027\", \"\u0027i can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries\u0027\"])]\ncodes=[Code(slug=\u0027holistic-recovery-focus-mecfs\u0027, name=\u0027Focusing on holistic recovery instead of individual symptoms\u0027, description=\u0027Participants described the importance of focusing on overall body support and holistic healing in managing MECFS rather than trying to treat each symptom individually. Trying to treat isolated symptoms was seen as overwhelming and ineffective, while a comprehensive approach contributed to gradual recovery.\u0027, quotes=[\u0027...my recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole...\u0027, \u0027...targeting the specific symptoms was never healing them in my experience...\u0027, \u0027...i pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone...\u0027]), Code(slug=\u0027symptom-comparison-limitations\u0027, name=\u0027Desire for symptom comparison but finding it unhelpful\u0027, description=\u0027Participants expressed wanting to compare their symptoms with others to find reassurance or hopeful signs of recovery, but found this approach often unhelpful or even misleading. They noted that MECFS symptoms vary widely across individuals, making direct symptom comparisons unproductive and potentially discouraging.\u0027, quotes=[\"...people want to compare their symptoms against mine... to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope...\", \"...if someone is sizing up their illness against my illness and it doesn\u0027t match exactly... that means that they do not have a chance of recovering...\", \"...don\u0027t get too caught up on comparing symptoms... scanning information for what were their test results... it probably won\u0027t help you personally...\"]), Code(slug=\u0027symptom-management-as-palliation-not-cure\u0027, name=\u0027Using symptom management mainly for comfort rather than recovery\u0027, description=\u0027Participants described symptom management during MECFS as largely palliative\u2014to ease discomfort\u2014not a path to cure. Painkillers, sedatives, and other symptom treatments helped manage the suffering temporarily but did not address the underlying illness, which required a broader healing strategy.\u0027, quotes=[\u0027...symptom management that i did was more palliative and not so much about recovery...\u0027, \u0027...if i had pain i might take painkillers or if i was having really bad problems with sleeping... i might go see my doctor and get some prescription sedatives...\u0027, \u0027...targeting the specific symptoms was never healing them in my experience...\u0027]), Code(slug=\u0027need-for-personalized-recovery-plans\u0027, name=\"Need to tailor recovery plans individually to each person\u0027s lifestyle and journey\", description=\"Participants highlighted the importance of creating personalized recovery plans tailored to each individual\u0027s unique symptoms, lifestyle, and disease experience. Recovery methods that worked for one person might not work for another, and pacing and treatments should be adapted accordingly.\", quotes=[\"...somebody\u0027s recovery plan and them selecting the things they want to try needs to be tailored as well...\", \u0027...pacing has to be tailored individually for a particular person because their life is so different...\u0027, \u0027...look at your own life like a scientist without freaking out about everything...\u0027]), Code(slug=\u0027frustration-with-symptom-focused-help-seeking\u0027, name=\u0027Frustration and disappointment from focusing on symptom-specific fixes\u0027, description=\u0027Participants shared feelings of desperation, frustration, and disillusionment from seeking specific symptom fixes through extensive research, treatments, and comparisons. Many attempts, including costly and risky interventions, failed to provide holistic healing, leading to emotional exhaustion and the need to find alternative strategies.\u0027, quotes=[\u0027...i spent thousands of hours googling my symptoms...\u0027, \u0027...this led me to spend thousands of dollars... i almost poisoning myself by buying organic elderberries...\u0027, \"...i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one...\"]), Code(slug=\u0027emotional-boundaries-around-symptom-discussion\u0027, name=\u0027Setting emotional boundaries around discussing past symptoms\u0027, description=\u0027Participants expressed the need to set boundaries around conversations about symptoms, including avoiding one-on-one symptom troubleshooting. Sharing their recovery stories was positive but revisiting symptoms was traumatic and could be overwhelming, necessitating limits to preserve well-being.\u0027, quotes=[\u0027...i now have boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either...\u0027, \"...writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there...\", \u0027...consider that people who share their stories are still human and it might still be fresh their challenges on their journey...\u0027])]\ncodes=[Code(slug=\u0027walking-miracle-gratitude-for-life-38\u0027, name=\u0027Walking miracle gratitude for life after chronic illness\u0027, description=\u0027This code captures the deep appreciation and awe the participant feels about living a life they once only dreamed of due to recovering from chronic illness. They describe moments of enjoying life with childlike wonder and being grateful each day despite small setbacks.\u0027, quotes=[\"I\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible\", \"this joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\", \"It\u0027s like being like when you watch a six year old wandering through the world ... these new eyes where you just get to almost be childlike again\"]), Code(slug=\u0027difficulty-relating-to-healthy-friends-81\u0027, name=\u0027Difficulty relating to healthy friends post illness\u0027, description=\u0027The participant experiences detachment and struggle maintaining friendships with physically healthy friends who complain about their lives. They find it hard to relate to people who seem to take their health for granted and have difficulty understanding those who choose not to engage in activities like working out, which the participant once loved but had to give up.\u0027, quotes=[\"It is hard though to have friends who\u0027ve never been through it ... and they complain about their lives and i just feel such a detachment sometimes\", \"Sometimes it\u0027s hard for me to be their friend now because I\u0027m like you have it all\", \u0027I really struggle with people who seem physically able to go to the gym but just choose not to\u0027, \"I would give anything to (work out) because i love working out so that\u0027s one of my things that i really miss\"]), Code(slug=\u0027diagnosis-delay-and-misdiagnosis-60\u0027, name=\u0027Frustration with delayed diagnosis and misdiagnosis\u0027, description=\"The participant recounts the challenges in receiving an accurate diagnosis. Initially diagnosed with fibromyalgia, their fatigue symptoms were overlooked which delayed appropriate treatment. They express frustration with the medical system\u0027s lack of understanding and care for their chronic fatigue symptoms over many years.\", quotes=[\u0027I was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued\u0027, \"no one would even really treat it i don\u0027t think they really what to do\", \u0027It took a while before i even got the chronic fatigue diagnosis but no one would even really treat it for many years\u0027]), Code(slug=\u0027self-advocacy-for-healthcare-72\u0027, name=\u0027Self advocacy and research to access better healthcare\u0027, description=\u0027The participant took an active role in managing their health by rehabilitating themselves, researching doctors, and eventually moving to access better medical care. They found a nurse practitioner who performed comprehensive blood work and helped identify underlying infections. This proactive approach was crucial for their eventual diagnosis and treatment plan.\u0027, quotes=[\u0027I kept rehabilitate myself ... researching doctors researching as much as i could\u0027, \"Eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors\", \u0027She was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that\u0027]), Code(slug=\u0027genetic-condition-discovery-and-treatment-75\u0027, name=\u0027Discovery and treatment of genetic mitochondrial disease\u0027, description=\u0027The participant was diagnosed with a rare mitochondrial disease through full genome testing. This diagnosis explained their inability to fight infections and fatigue. Treatment included a mitochondrial cocktail which helped their body produce mitochondria and regain strength to combat infections, marking a turning point in their recovery.\u0027, quotes=[\u0027I did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven\u0027, \"He put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections\", \u0027By him supplementing and boosting my mitochondria i could now fight the infections\u0027]), Code(slug=\u0027drastic-lifestyle-changes-for-recovery-81\u0027, name=\u0027Drastic lifestyle changes including diet and environment for recovery\u0027, description=\u0027The participant emphasizes the importance of significant lifestyle modifications for healing including an elimination diet, gradual movement rehabilitation, and removing environmental toxins. Specific dietary changes involved cutting out dairy, gluten, sugar, and nightshades, which were once inflammatory but sometimes reintroduced gradually.\u0027, quotes=[\u0027I had to dramatically change my diet ... use food as medicine as a mindset\u0027, \u0027I removed all toxic ingredients immunotoxic i water filtration system on my house\u0027, \u0027Dairy gluten and sugar were main offenders and nightshades bothered me for a while\u0027]), Code(slug=\u0027overcoming-sugar-addiction-for-healing-56\u0027, name=\u0027Overcoming intense sugar addiction to support healing\u0027, description=\u0027The participant describes an intense physical addiction to sugar that disrupted their health and sleep patterns. Through gut healing and probiotics, cravings diminished, allowing them to develop a healthier relationship with food and regain control over their eating habits, marking an important step in recovery.\u0027, quotes=[\u0027Sugar was a massive one for me and sugar was a tough one for me ... i clearly had a physical addiction\u0027, \u0027I would get up in the middle of the night every single night and eat sugar\u0027, \u0027Once my body started healing the cravings went away\u0027]), Code(slug=\u0027movement-therapy-as-gentle-rehab-63\u0027, name=\u0027Movement therapy as gentle rehabilitation rather than exercise\u0027, description=\u0027The participant highlights the importance of very gradual and gentle movement therapy rather than typical exercise. They emphasize the challenges of balancing activity and rest in chronic fatigue syndrome, noting that even a few minutes of movement can be critical for oxygenation and lymphatic flow while avoiding pushing to the point of relapse.\u0027, quotes=[\u0027I had to gradually increase my ability to move\u0027, \u0027My exercise program was so small you know it was one to two minutes a day and in the beginning not even every single day\u0027, \u0027I couldn\u2019t rest my way out of this i couldn\u2019t just lay in bed or lay on the couch all day\u0027]), Code(slug=\u0027psychological-impact-and-growth-from-illness-80\u0027, name=\u0027Psychological impact and personal growth from chronic illness experience\u0027, description=\u0027The participant reflects on how chronic illness fundamentally changed their identity, values, and spirituality. They describe feelings of humility, acceptance, and deeper self-worth beyond professional achievements. The illness brought perspective, spiritual growth, gratitude, and a renewed appreciation for life and relationships.\u0027, quotes=[\u0027It humbled me changed me i maybe was prideful before i wouldn\u2019t say i had a spirituality before\u0027, \u0027I had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\u0027, \u0027this illness catapults our growth and puts us in a better direction\u0027]), Code(slug=\u0027fear-and-anxiety-during-pregnancy-after-illness-64\u0027, name=\u0027Fear and anxiety about pregnancy symptoms being illness relapse\u0027, description=\u0027The participant shares the anxiety and uncertainty during pregnancy about whether normal pregnancy symptoms like fatigue and headaches signal illness relapse. They learn to differentiate normal pregnancy experiences from chronic illness symptoms, practicing self-compassion and cautious optimism about their health journey.\u0027, quotes=[\"I keep reminding myself these are normal symptoms it\u0027s triggering sometimes to be like is this normal fatigue or is this going back\", \u0027I keep reminding myself no it\u2019s normal to have headaches when you\u2019re pregnant it\u2019s normal to feel tired\u0027, \u0027It has been quite a journey i keep reminding myself sometimes\u0027]), Code(slug=\u0027hope-and-positivity-in-chronic-illness-recovery-57\u0027, name=\u0027Hope and positivity through seeing others recover from chronic illness\u0027, description=\u0027The participant expresses how seeing recovery stories from others provides essential hope and motivation for their own healing journey. They highlight the loneliness and despair without such examples and stress the importance of community and shared experiences in sustaining perseverance through chronic illness.\u0027, quotes=[\"It\u0027s so nice to see so many people that are getting past these things\", \u0027I remember when i first got sick i was trying to find recovery stories and i just couldn\u2019t find any\u0027, \"People start reaching out to me it\u0027s crazy like hey so nice to meet you you recovered as well\"]), Code(slug=\u0027self-empowerment-through-knowledge-and-faith-64\u0027, name=\u0027Self empowerment through knowledge acquisition and faith in recovery\u0027, description=\"The participant credits their recovery journey to extensive self-education about their condition combined with their faith and spiritual trust. They emphasize the importance of trusting the healing process and rejecting limiting prognoses, comparing learning about illness to earning a \u0027bachelor\u2019s degree\u0027 in chronic illness.\", quotes=[\u0027I would just tell myself to trust that process\u0027, \u0027I had to go through all those years of research and learning\u0027, \u0027It was like getting a bachelor\u2019s degree in chronic illness\u0027, \u0027You cannot limit a limitless guy\u0027])]\ncodes=[Code(slug=\u0027scary-and-confusing-early-illness-experience\u0027, name=\u0027Scary and confusing early illness experience\u0027, description=\u0027Participant describes the initial onset of chronic fatigue as confusing, frightening, and strange with symptoms that were hard to understand and manage. She was overwhelmed by sudden health decline and had to leave university, indicating a disruptive and scary period.\u0027, quotes=[\"i just didn\u0027t feel well at all... felt a bit fluy felt a bit strange felt a bit scared because it felt really weird\", \"i didn\u0027t know what was going on\", \"it was a really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed\"]), Code(slug=\u0027feeling-isolated-due-to-illness\u0027, name=\u0027Feeling isolated due to illness\u0027, description=\u0027Participant felt isolated because she had to return home and was separated from her friends who were still attending university, leading to feelings of loneliness with limited social support beyond family.\u0027, quotes=[\"all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family\", \u0027it was a very tough time\u0027]), Code(slug=\u0027rejection-of-depression-diagnosis-and-emotional-awareness\u0027, name=\u0027Rejection of depression diagnosis and emotional awareness\u0027, description=\"Participant rejected doctors\u0027 initial diagnosis of depression as the sole cause, sensing a deeper underlying physical illness despite emotional challenges and some depressive feelings related to her illness.\", quotes=[\u0027one of the first doctors said she just thought i was depressed that was it\u0027, \"i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell\"]), Code(slug=\u0027hope-from-meditation-and-yoga-practices\u0027, name=\u0027Hope from meditation and yoga practices\u0027, description=\u0027Early engagement with meditation, yoga, and breath work brought short-lived improvements, offering participant moments of hope and relief, though benefits were often temporary and inconsistent over long recovery.\u0027, quotes=[\u0027i thought i did think quite early on well perhaps meditation and yoga can help me heal\u0027, \u0027doing the alternate nostril breathing and noticing i felt different after doing it\u0027, \"sometimes i\u0027d notice i felt considerably better after doing one\"]), Code(slug=\u0027desperation-leads-to-trying-various-alternative-therapies\u0027, name=\u0027Desperation leads to trying various alternative therapies\u0027, description=\u0027Participant pursued numerous alternative therapies out of desperation including acupuncture, reiki, nutrition therapy, and colon hydrotherapy, often with limited or mixed success, reflecting urgent search for a cure.\u0027, quotes=[\"i\u0027d go for reiki and i\u0027d go for this and i go for that\", \u0027i even flew to america...to work with a healer\u0027, \u0027just loads of things i was i was so desperate to be well\u0027]), Code(slug=\u0027realization-of-suppressed-anger-and-unresolved-trauma\u0027, name=\u0027Realization of suppressed anger and unresolved trauma\u0027, description=\u0027Participant identified a deep pattern of suppressing anger and unreleased trauma impacting her recovery, acknowledging emotional blocks and the role of unresolved feelings in her physical symptoms.\u0027, quotes=[\"i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\", \u0027one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs\u0027]), Code(slug=\u0027mind-body-connection-and-trauma-understanding\u0027, name=\u0027Mind-body connection and trauma understanding\u0027, description=\u0027Participant found significant healing through acknowledging the mind-body link, understanding symptoms as manifestations of trauma such as freeze responses, and exploring emotional triggers underlying physical states.\u0027, quotes=[\u0027it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom\u0027, \u0027a lot of it was the impact of trauma on my system manifesting physically like a freeze response\u0027, \u0027started to really understand the mind body connection\u0027]), Code(slug=\u0027learning-authentic-self-expression-and-setting-boundaries\u0027, name=\u0027Learning authentic self-expression and setting boundaries\u0027, description=\u0027Recovery involved learning to express authentic emotions and needs without fear of upsetting others, using communication skills like non-violent communication to balance self-care and relationships.\u0027, quotes=[\u0027learning to be more myself more authentic\u0027, \u0027learning non violent communication... a way that i could communicate my feelings without it also being too much for someone else\u0027, \"it\u0027s okay to have needs\"]), Code(slug=\u0027spiritual-experience-as-part-of-healing-journey\u0027, name=\u0027Spiritual experience as part of healing journey\u0027, description=\u0027Spiritual awakening, meditation, and mystical experiences were deeply meaningful but sometimes destabilizing aspects of the recovery journey, requiring learning to balance spiritual insights with daily functioning.\u0027, quotes=[\u0027i had a kundalini or spiritual some kind of spiritual awakening\u0027, \u0027sometimes i felt like i left my body and i was like connecting with the whole universe\u0027, \u0027i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way\u0027]), Code(slug=\u0027ongoing-self-care-and-regulation-post-recovery\u0027, name=\u0027Ongoing self-care and regulation post recovery\u0027, description=\u0027Even years after recovery, participant still needed to manage emotional and trauma-related symptoms with self-regulation strategies like nature exposure and therapeutic work to maintain balance and well-being.\u0027, quotes=[\u0027i did have periodically sort of what i would now describe as trauma type symptoms\u0027, \"i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature\", \u0027that can still happen today but not to the extent it was\u0027]), Code(slug=\u0027career-shift-driven-by-healing-experience\u0027, name=\u0027Career shift driven by healing experience\u0027, description=\"Participant\u0027s prolonged healing journey influenced her career choice toward coaching and therapeutic work, integrating personal recovery insights into professional roles and continuous learning.\", quotes=[\"i\u0027ve done lots of different kinds of therapeutic and coaching trainings\", \u0027been working in this field myself nearly twenty years\u0027, \u0027i do keep up quite a few of the practices that support me to heal and new practices\u0027]), Code(slug=\u0027recognizing-familial-and-ancestral-trauma-impact-on-health\u0027, name=\u0027Recognizing familial and ancestral trauma impact on health\u0027, description=\u0027Participant highlights the role of ancestral and family line trauma influencing illness patterns, recognizing wider systemic and generational factors contributing to chronic fatigue symptoms.\u0027, quotes=[\"a lot of my trauma wasn\u0027t necessarily personal but was ancestral... took on from my family line\", \u0027sometimes... an illness in one person might not be the root but a wider family system issue\u0027])]\ncodes=[Code(slug=\u0027trauma-led-health-crisis\u0027, name=\u0027Trauma leading to sudden health crisis and exhaustion\u0027, description=\u0027Participant describes a traumatic sexual assault and subsequent intense physical illness (urinary tract infection during long flight) that triggered sudden, severe exhaustion and ME/CFS symptoms such as insomnia, brain fog, and digestive issues lasting for years.\u0027, quotes=[\"i was sexually assaulted and that led to a really grueling urinary tract infection... whole system just kind of blacked out... i just went totally kaput i felt like i had the flu twenty four seven... i felt like i couldn\u0027t remember the name of... digestive issues... hot flashes and pre menopausal symptoms even though i was so young\"]), Code(slug=\u0027fear-and-uncertainty-after-diagnosis\u0027, name=\u0027Fear and uncertainty following chronic fatigue syndrome diagnosis\u0027, description=\u0027Upon receiving the chronic fatigue syndrome diagnosis, the participant experienced a mix of relief for having an explanation and devastating fear, likening the prognosis to a death or life sentence with no cure and ongoing suffering.\u0027, quotes=[\u0027you know i was so scared... i remember bawling... it was such a death sentence but in a way a life sentence that i was given that i would have to live with for years\u0027, \"on the one hand i was relieved to have a diagnosis... on the other hand it was really devastating... a natural path doctor said there\u0027s no cure\"]), Code(slug=\u0027resentment-towards-prescribed-diets\u0027, name=\u0027Resentment towards restrictive diets imposed in treatment\u0027, description=\u0027The participant describes feeling misery and resentment towards elimination diets (gluten-free, sugar-free, dairy-free) and restrictions imposed by medical and natural health practitioners that were not collaboratively chosen and felt imposed rather than empowering.\u0027, quotes=[\"it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating\", \"i felt like it was being done to me... actually he said you know what i think that\u0027s perpetuating the trauma\", \"there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing\"]), Code(slug=\u0027regaining-agency-in-healing\u0027, name=\u0027Regaining personal agency and control in healing journey\u0027, description=\u0027Participant highlights the importance of reclaiming personal power and actively collaborating in their healing process, as opposed to passively following medical instructions, which increased resentment and hindered healing progress.\u0027, quotes=[\u0027at some point i have to regain my agency and my power and my collaboration in my healing\u0027, \u0027i started realizing with diet and everything else... otherwise i was resenting it\u0027, \"someone sees me and i didn\u0027t even know that\u0027s how i felt\"]), Code(slug=\u0027mental-peace-despite-physical-symptoms\u0027, name=\u0027Experiencing mental peace while symptoms persist\u0027, description=\u0027Despite ongoing severe physical symptoms, participant describes achieving a mental state of peace and nonresistance through meditation and spiritual connection, observing symptoms without emotional struggle, which aided emotional coping and eventual recovery progress.\u0027, quotes=[\"there was this internal state of nonresistance or peace... and it really wasn\u0027t something i tried to do... it just kind of happened\", \u0027i was kind of watching the symptoms but felt peace\u0027, \u0027i really started meditating and practicing yoga and that sense of spiritual connection really helped\u0027]), Code(slug=\u0027brain-based-explanation-for-fatigue-symptoms\u0027, name=\u0027Adopting brain and nervous system explanation for ME/CFS symptoms\u0027, description=\"Learning that symptoms are perpetuated by brain and nervous system\u0027s stress response and not directly by viruses or physical damage gave participant hope and understanding, shifting from feeling helpless to empowered to calm the nervous system.\", quotes=[\u0027she explained all these viruses were suppressing the immune system... but it was how her brain and nervous system were processing stress\u0027, \"she said \u0027you\u0027re not sick, you\u0027re stressed, your system is stuck in this pattern\u0027\", \u0027the brain generates pain... fatigue because it senses danger... danger can be psychological as well as physical\u0027]), Code(slug=\u0027self-compassion-supporting-recovery\u0027, name=\u0027Cultivating self-compassion to manage symptoms and aid recovery\u0027, description=\u0027Participant emphasizes that adopting self-compassion and kindness toward oneself reduces self-criticism that otherwise triggers stress and perpetuates symptoms, enabling more effective emotional regulation and eventual physical improvement.\u0027, quotes=[\u0027self criticism actually does activate the danger alarm in the brain... so it can feed into symptoms\u0027, \"i just talk to myself in a compassionate way... i\u0027m so sorry... what do you want or need right now\", \u0027to realize having compassion on ourselves is helpful and can soften the blow\u0027]), Code(slug=\u0027impact-of-personality-on-symptom-perpetuation\u0027, name=\u0027Role of personality traits like perfectionism in illness experience\u0027, description=\u0027Perfectionism, people-pleasing, conscientiousness and holding in emotions were discussed as personality traits common in those with ME/CFS, contributing to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.\u0027, quotes=[\u0027perfectionist check, people pleasers check... really conscientious, hard driving\u0027, \"holding the emotions... it\u0027s kind of like a pressure cooker\", \u0027people who get cfs are really nice people but they hold in emotions\u0027]), Code(slug=\u0027importance-of-emotional-processing\u0027, name=\u0027Acknowledging and processing emotions as key to recovery\u0027, description=\u0027Participant shares therapeutic practices like journaling and psychotherapy that helped them express anger, grief, and trauma, releasing emotional pressure that contributed to nervous system hypervigilance and symptom worsening.\u0027, quotes=[\u0027some psychotherapy was helpful... talk through griefs\u0027, \u0027i did some journaling... just to get out frustration i was too nice to say to anyone\u0027, \u0027journaling your anger... bottled up anger can be very harmful\u0027]), Code(slug=\u0027validation-and-hope-from-connection\u0027, name=\u0027Finding validation and hope through empathetic connection\u0027, description=\u0027Talking with someone who truly understood the illness experience and explained the brain-based mechanism provided a critical moment of validation and hope, leading to a spontaneous increase in energy and belief in recovery.\u0027, quotes=[\u0027she cared a lot... spent three hours on the phone with me\u0027, \u0027i felt like i finally heard the truth... it gave me hope\u0027, \u0027after that conversation i got up and ran around the block like i had not ran in thirteen years\u0027])]\ncodes=[Code(slug=\u0027energy-loss-and-fatigue-in-cfs-long-covid\u0027, name=\u0027Energy loss and fatigue reducing daily activity\u0027, description=\u0027Participant experienced a noticeable drop in energy and motivation to engage in usual activities, leading to extended periods of rest and physical symptoms like canker sores, reflecting the debilitating impact of CFS/long COVID on daily life.\u0027, quotes=[\"...i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities...\", \u0027...laying in bed i would get these canker sores and just overall not feeling the best\u0027]), Code(slug=\u0027frustration-of-inconclusive-medical-tests\u0027, name=\u0027Frustration from inconclusive medical investigations\u0027, description=\u0027Participant felt frustration and uncertainty when medical tests showed normal results despite ongoing symptoms, leading to self-doubt about the origin of symptoms and exploration of mental health explanations.\u0027, quotes=[\u0027...i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work...\u0027, \u0027...thought maybe it was something mentally that was causing this\u0027]), Code(slug=\u0027initial-skepticism-of-brain-retraining-technique\u0027, name=\u0027Initial skepticism towards brain retraining techniques\u0027, description=\u0027Participant was initially doubtful about the efficacy of brain retraining and hypnosis-related methods but committed to the program and found these techniques effective for symptom management and anxiety reduction.\u0027, quotes=[\u0027...in the beginning i was a little skeptical because the program does have like a hypnosis type of effect...\u0027, \u0027...once i really committed to learning the program it really made a difference\u0027]), Code(slug=\u0027importance-of-mental-stamina-for-active-recovery\u0027, name=\u0027Importance of mental stamina for physical activity recovery\u0027, description=\u0027Participant emphasized the growth in mental stamina and positive mindset as critical to progressing from basic functioning to running a 10k and training for a marathon, showing the mental aspects integral to physical recovery.\u0027, quotes=[\"...before i don\u0027t think i would have had the mental stamina to do that...\", \u0027...now i just have that positive affirmations and changing the way of my mindset from fix to growth...\u0027]), Code(slug=\u0027valuing-supportive-encouragement-in-recovery\u0027, name=\u0027Valuing supportive and personal encouragement during recovery\u0027, description=\u0027Participant highlighted how personalized encouragement and belief from program coach Jason boosted motivation and aided recovery, illustrating the importance of personal connection in healing journeys.\u0027, quotes=[\"...he would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great...\", \"...it\u0027s just great having someone who believes in you that much...\"]), Code(slug=\u0027developing-empowering-self-statements\u0027, name=\u0027Developing empowering self-statements to combat anxiety\u0027, description=\u0027Participant learned to replace disempowering anxiety statements with growth-oriented affirmations, facilitating a more positive and hopeful mindset conducive to ongoing recovery and emotional resilience.\u0027, quotes=[\"...i didn\u0027t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better...\", \"...that\u0027s more of a journey rather than oh i\u0027m stuck at this state of anxiety...\"]), Code(slug=\u0027recognizing-the-journey-of-recovery-not-a-fix\u0027, name=\u0027Recognizing recovery as a journey, not a fixed state\u0027, description=\u0027Participant expressed understanding that recovery involves ongoing management rather than complete absence of symptoms, using tools to address fluctuations and maintain progress without fear.\u0027, quotes=[\"...i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools...\", \"...you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been...\"])]\ncodes=[Code(slug=\u0027long-covid-frustration-and-isolation\u0027, name=\u0027Feeling frustrated and isolated due to long COVID limitations\u0027, description=\u0027Participants express frustration with the ongoing symptoms and limitations imposed by long COVID, highlighting feelings of isolation and disconnection from their former healthy selves and social life. This includes struggles with physical and cognitive impairments and the emotional toll of not being understood.\u0027, quotes=[\u0027...I just feel so drained all the time, like I used to be so active and now I can barely manage a short walk...\u0027, \"...people don\u0027t see the struggle you go through every day, it makes you feel very alone...\", \u0027...it\u2019s frustrating because you want to get better but the symptoms just keep dragging you down...\u0027]), Code(slug=\u0027desire-for-understanding-and-validation\u0027, name=\u0027Desire for understanding and validation from others\u0027, description=\u0027Participants highlight a strong need for others to acknowledge and believe their experience with long COVID and ME/CFS, as they often face skepticism or misunderstanding. This recognition is crucial for emotional support and reducing the stigma they encounter.\u0027, quotes=[\u0027...sometimes it feels like people think it\u2019s all in your head...\u0027, \u0027...I just want doctors and my family to really understand what I\u2019m going through...\u0027, \u0027...validation would mean the world because it proves that I\u2019m not making this up...\u0027]), Code(slug=\u0027need-to-regain-physical-energy-and-function\u0027, name=\u0027Need to regain physical energy and return to normal function\u0027, description=\u0027A consistent desire to regain lost physical energy and resume activities that were previously routine is expressed. Participants describe longing to be able to do simple physical tasks, exercise, and engage in social and work activities without debilitating fatigue.\u0027, quotes=[\u0027...if I could just get some of my energy back, I\u2019d feel like myself again...\u0027, \u0027...I miss being able to just go for a jog or play with my kids without getting exhausted...\u0027, \u0027...the fatigue is so overwhelming that even making a meal feels like climbing a mountain...\u0027]), Code(slug=\u0027search-for-effective-treatment-and-cures\u0027, name=\u0027Search for effective treatment and cures for symptom relief\u0027, description=\u0027Participants discuss their ongoing search for treatments or interventions that can bring relief from symptoms or lead to recovery. This includes frustration at the lack of clear treatments and the trial and error of various therapies.\u0027, quotes=[\u0027...I\u2019ve tried so many treatments, but nothing seems to really work...\u0027, \u0027...it\u2019s heartbreaking to not find anything that helps the pain or fatigue...\u0027, \u0027...I keep hoping for a cure that will help me move on with my life...\u0027]), Code(slug=\u0027coping-with-identity-changes\u0027, name=\u0027Coping with changes to identity and sense of self\u0027, description=\u0027Participants reflect on the impact the illness has had on their identity and sense of self, expressing a mourning for their previous healthy self and struggling with the new limitations and changed roles in relationships and life.\u0027, quotes=[\u0027...I don\u2019t recognize the person I am now compared to before...\u0027, \u0027...it\u2019s hard to accept that I can\u2019t do what I used to do...\u0027, \u0027...sometimes I feel like I\u2019ve lost who I was...\u0027])]\ncodes=[Code(slug=\u0027anger-fight-flight-physiology-chronic-pain\u0027, name=\u0027Anger as fight or flight physiology driving chronic pain\u0027, description=\u0027Participants describe anger not as a psychological issue but as a physiological survival response generated by fight or flight sensations in the body. This intense physiological arousal leads to chronic pain and symptoms that are deeply wired in their nervous system, making them uncontrollable by conscious mind alone.\u0027, quotes=[\"the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight\", \u0027anger and anxiety are physiological survival responses that we have no control over zero\u0027, \u0027anger and anxiety are gifts i mean how you survive without anger and anxiety\u0027]), Code(slug=\u0027chronic-pain-neuroplasticity-memory-pain-circuits\u0027, name=\u0027Chronic pain as embedded memory in neuroplastic pain circuits\u0027, description=\"Chronic pain is explained as an embedded memory in the brain\u0027s pain circuits that cannot be erased. Participants feel their pain persists because the brain memorizes the pain experience permanently, similar to phantom limb pain. Fighting the pain reinforces these circuits, while acceptance and new living patterns enable transcendence and symptom reduction.\", quotes=[\u0027the pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone\u0027, \u0027the more you try to fight it and solve it the more you reinforce it\u0027, \"you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain\"]), Code(slug=\u0027role-of-unconscious-brain-in-survival-and-pain\u0027, name=\u0027Unconscious brain drives survival responses and chronic symptoms\u0027, description=\u0027Participants express how the unconscious brain processes millions of bits of information per second to keep them alive, without needing the conscious brain. Chronic symptoms arise from unconscious physiological threat states that the conscious brain struggles to control, explaining difficulty in managing chronic illness through conscious effort alone.\u0027, quotes=[\u0027the unconscious brain keeps you alive we do not need conscious brain to stay alive\u0027, \u0027the unconscious brain is eleven million bits of your patient per second the conscious brain is forty\u0027, \"you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes\"]), Code(slug=\u0027letting-go-fighting-pain-key-to-healing\u0027, name=\u0027Letting go of fighting pain as crucial to healing process\u0027, description=\u0027Participants describe a shift from actively trying to fix or fight their pain towards letting go and accepting it as key to healing. This change in relationship towards pain reduces reinforcement of pain circuits, enables separation from pain, and supports creating new, pain-free neural pathways through living life on their own terms.\u0027, quotes=[\"the hardest part of this project by far is people can\u0027t help but try to fix themselves\", \u0027you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain\u0027, \"the pain she or you\u0027re here as you start getting on with your life the way you want to your terms that\u0027s the solution\"]), Code(slug=\u0027threat-physiology-explains-chronic-symptoms\u0027, name=\u0027Threat physiology underlies chronic mental and physical symptoms\u0027, description=\u0027Participants reveal that chronic symptoms, including pain, anxiety, depression and other diseases, stem from sustained threat physiology involving hyperactive nervous system responses and inflammation. This state breaks down the body over time and maintains symptoms, emphasizing the need to calm the physiology rather than solely treat symptoms.\u0027, quotes=[\u0027every chronic disease with few exceptions are related to chronic stress\u0027, \u0027the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really\u0027, \u0027chronic fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress\u0027]), Code(slug=\u0027separation-from-negative-thoughts-in-pain\u0027, name=\u0027Separating oneself from negative and repetitive thoughts\u0027, description=\u0027Participants highlight the importance of separating their identity from negative intrusive thoughts and repetitive thought patterns that fuel anxiety and pain. Techniques like expressive writing, mindfulness and cognitive behavioral therapy help create this separation, reducing the physiological arousal that these thoughts cause.\u0027, quotes=[\"separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play\", \u0027if you work with that much so that separates you from the thoughts not solving them to say thought separation process\u0027, \u0027by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing\u0027]), Code(slug=\u0027nurturing-joy-for-chronic-pain-healing\u0027, name=\u0027Nurturing joy as a vital part of healing journey\u0027, description=\u0027Participants emphasize nurturing joy through positive experiences, relationships, and mindset as essential for healing chronic pain and symptoms. Joy helps build new neural pathways, counterbalances threat physiology, and supports a flourishing life beyond pain rather than solely focusing on fixing negative symptoms.\u0027, quotes=[\"the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible\", \"you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing\", \"you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs\"]), Code(slug=\u0027importance-of-sleep-diet-exercise-in-nervous-system-calm\u0027, name=\u0027Importance of sleep diet and exercise for calming nervous system\u0027, description=\u0027Participants discuss sleep, diet, and exercise as foundational pillars to calm the nervous system and support healing. Lack of sleep contributes directly to chronic pain development, and improving these areas helps regulate physiology, reduce inflammation, and promote regeneration, forming an essential part of recovery processes.\u0027, quotes=[\"if you address sleep is number one people weren\u0027t sleeping\", \u0027lack of sleep actually causes chronicle back pain not the way around\u0027, \u0027sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system\u0027]), Code(slug=\u0027role-of-physiology-over-conscious-control\u0027, name=\"Physiology\u0027s dominance over conscious brain in symptom experience\", description=\u0027Participants relate that physiological responses in the nervous system vastly overpower the conscious brain\u2019s ability to control thoughts or symptoms. Fight or flight states inhibit neocortex functions and cognitive thinking, resulting in automatic reactions and making conscious efforts insufficient to manage symptoms alone.\u0027, quotes=[\"it\u0027s about half a million times stronger than your conscious brain\", \"when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work\", \"by the time you think about it so let\u0027s have a thoughts for second\"]), Code(slug=\u0027skepticism-as-starting-point-for-healing-engagement\u0027, name=\u0027Using skepticism as a starting point to engage in healing\u0027, description=\u0027Participants express that skepticism is a natural and valid initial stance for people learning this approach. Encouraging embracing skepticism helps people start the healing journey by connecting with their own experience rather than blind belief, promoting curiosity and gradual learning to shift physiology and symptoms.\u0027, quotes=[\"i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said\", \"the key is connect to what\u0027s in there which is skepticism\", \u0027connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change\u0027])]\ncodes=[Code(slug=\u0027book-as-key-to-chronic-pain-recovery\u0027, name=\u0027Book as key to chronic pain recovery approach\u0027, description=\u0027The participant found a specific book by Dr. John Sarno pivotal in understanding and recovering from chronic pain and multiple other health issues. This self-help resource resonated deeply with their symptoms and personality, leading to significant healing and influencing their therapeutic career.\u0027, quotes=[\u0027i found a book by a guy named john sono... my back pain was gone within a few months ... a lot of other health problems i had suffered with for years went away\u0027, \u0027sorrow said that a lot of people could get better just by reading the book\u0027, \u0027the symptoms right the fact that i had always had something really since i was a kid ... it was really resonating\u0027, \u0027the personality characteristics... were so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions\u0027]), Code(slug=\u0027emotion-focused-therapy-for-pain\u0027, name=\u0027Emotion-focused therapy as core to pain recovery process\u0027, description=\"Emotion-focused therapy, particularly Intensive Short-Term Dynamic Psychotherapy (ISTDP), is central to the participant\u0027s approach to chronic pain recovery. It focuses on safely accessing and processing suppressed emotions, especially anger and rage, which manifest as physical pain.\", quotes=[\u0027the core of the intervention is this emotion focused approach... all emotions are healthy... we learn to disconnect from these emotions\u0027, \u0027we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain\u0027, \u0027brain pain research shows chronic pain lights up the amygdala which is responsible for emotions anger rage\u0027, \u0027ISTDP therapy allows patients to notice their bodily tension which is often anxiety about feeling anger or rage, helping them process these emotions\u0027]), Code(slug=\u0027barriers-to-therapy-engagement-and-trust\u0027, name=\u0027Barriers to engaging with emotion-focused therapy include fear and trust issues\u0027, description=\u0027The participant acknowledges that many patients struggle with engaging in ISTDP therapy due to fears, defenses, and trust issues. Therapy requires gradual emotional exposure at a tolerable pace to avoid setbacks, with some patients needing more time and support to lower their defenses and benefit.\u0027, quotes=[\"some folks can work through the process very quickly... but others it\u0027s more complicated and harder\", \u0027i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions\u0027, \u0027ISTDP is incredibly difficult but supportive... it requires building emotional threshold gradually\u0027, \u0027some people resist because dealing with emotions is hard work, their symptoms can flare up as they engage emotionally\u0027]), Code(slug=\u0027transformation-in-professional-acceptance\u0027, name=\u0027Growing acceptance of emotion-focused therapy among medical professionals\u0027, description=\"Over time, there has been significant progress in the medical and professional community\u0027s acceptance of emotion-focused therapy for chronic pain, with increased training and referrals. Despite previous stigma, doctors now recognize the scientific support and therapeutic benefits, leading to more integration in treatment.\", quotes=[\u0027most of the folks that i work with come to me because they know and understand and accept this\u0027, \"i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work\", \u0027medical schools are starting to have pain curriculum now and look towards scientifically supported approaches\u0027, \u0027doctors call me to see patients because there is a growing recognition of this approach\u0027]), Code(slug=\u0027mindset-shift-needed-for-therapy-acceptance\u0027, name=\u0027Mindset shift required for accepting therapy as part of recovery\u0027, description=\u0027Many patients initially see therapy only as coping rather than a true recovery pathway. The participant highlights the need for a paradigm shift from viewing mental health as separate to understanding physical and emotional health integration to accept emotion-focused therapy as a vital part of healing chronic pain.\u0027, quotes=[\u0027most of us think of our mental health and physical health as two separate things\u0027, \"addressing your mental health stuff is a nice to have when i was really sick i started going into therapy but it wasn\u0027t to make myself get better it was just to help me cope\", \u0027this is such a change in mindset and our understanding to see this as part of their path to getting better\u0027]), Code(slug=\u0027emotions-understood-as-physical-pain-source\u0027, name=\u0027Understanding emotions as the source of physical pain\u0027, description=\u0027The participant explains how emotions, especially those deemed unacceptable or dangerous, are converted into physical symptoms like chronic pain, supported by MRI studies. This understanding validates the psychological origins of pain and the need to address emotions therapeutically rather than focusing solely on structural damage.\u0027, quotes=[\u0027sometimes we develop strategies to ward off these uncomfortable or dangerous emotions and for chronic pain patients it tends to be physical pain\u0027, \u0027MRI research supports the process of emotions transforming into physical form\u0027, \u0027chronic pain patients brains light up the amygdala which is responsible for emotions like anger and rage\u0027, \"there\u0027s really no very little relationship between structural changes and the pain that you\u0027re experiencing\"])]",
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"output": "themes=[Theme(name=\u0027Experiencing relentless fatigue and energy crashes with post-exertion collapse\u0027, description=\u0027Participants describe extreme exhaustion where standing up or doing basic activities leads to complete energy drain, necessitating long periods of bed rest and causing severe impact on daily functioning, including being bedridden for months. This persistent fatigue cycles with relapses particularly after overexertion, underscoring the debilitating nature of their conditions.\u0027, code_slugs=[\u0027persistent-fatigue-and-energy-drain\u0027, \u0027overexertion-and-relapse-cycle\u0027, \u0027relentless-pushing-despite-limitations\u0027]), Theme(name=\u0027Struggling to accept illness limits while refusing to give up hope\u0027, description=\u0027Participants reveal a tension between denial and acceptance of chronic illness limitations. They maintain a positive and obstinate mindset, resisting the notion of permanent disability. Despite setbacks and long-term fatigue, they sustain hope, learning lifestyle changes and gradual self-awareness to manage symptoms while holding onto the belief of eventual remission rather than cure.\u0027, code_slugs=[\u0027realization-to-accept-lifestyle-changes\u0027, \u0027maintaining-hope-and-positivity-despite-chronic-illness\u0027, \u0027self-awareness-to-avoid-overexertion\u0027]), Theme(name=\u0027Embracing brain retraining programs to regain control and recovery\u0027, description=\"Participants initially skeptical of brain-based recovery methods, come to accept and engage with brain retraining that addresses protective \u0027fight or flight\u0027 responses encoded in the body\u2019s genes. They find validation and structured approaches that enable confidence and early positive signs, with brain retraining experienced as a crucial part of their recovery journey and self-healing process.\", code_slugs=[\u0027brain-retraining-as-a-recovery-path\u0027]), Theme(name=\u0027Learning boundaries and managing social demands to conserve energy\u0027, description=\u0027Participants emphasize the importance of setting clear boundaries to avoid energy depletion, such as letting non-essential calls go to voicemail and managing people-pleasing tendencies. They highlight struggle and growth in learning to say no and delay tasks, balancing social demands with personal health needs to prevent relapse and better manage chronic fatigue symptoms.\u0027, code_slugs=[\u0027learning-boundaries-to-manage-energy\u0027]), Theme(name=\u0027Difficulty with genuine rest and retraining habits for meaningful relaxation\u0027, description=\"Participants report difficulty with standard relaxation and meditation practices, struggling to let go and genuinely rest. They describe the challenge of retraining their minds to value and consistently implement \u0027real rest\u0027 like naps or meditation, essential for recovery but alien to ingrained habits and mental states shaped by chronic fatigue.\", code_slugs=[\u0027difficulty-with-relaxation-and-rest\u0027]), Theme(name=\u0027Frustration and emotional challenges from others misunderstanding illness and recovery\u0027, description=\u0027Participants express ongoing emotional struggle when others minimize or fail to understand their illness experience and recovery process. They describe feelings of frustration, flaring up, and limited patience with ignorance or misjudgment, especially from those who never had the illness or who challenge their lifestyle adaptations, revealing a significant social and psychological burden.\u0027, code_slugs=[\u0027frustration-with-misunderstanding-by-others\u0027])]\nthemes=[Theme(name=\u0027Seeking comprehensive healing beyond individual MECFS symptom treatments\u0027, description=\u0027Participants expressed the importance of a holistic recovery approach, supporting the body as a whole rather than targeting specific symptoms. They found that symptom management provided only palliative relief and was insufficient for healing. Focusing too much on isolated symptoms was overwhelming and not helpful, while a broad, integrated strategy led to gradual overall improvement and resolution of symptoms.\u0027, code_slugs=[\u0027holistic-recovery-focus-mecfs\u0027, \u0027symptom-management-as-palliation-not-cure\u0027]), Theme(name=\u0027Feeling frustrated and disillusioned by symptom-specific research and treatments\u0027, description=\u0027Participants shared feelings of desperation and disappointment from extensively researching specific symptoms and fixes, including costly, risky, and ineffective treatments. They experienced emotional exhaustion after repeated failures to find symptom-specific cures. This led to recognition that a more comprehensive healing strategy was necessary beyond attempting to stop symptoms one-by-one.\u0027, code_slugs=[\u0027frustration-with-symptom-focused-help-seeking\u0027, \u0027holistic-recovery-focus-mecfs\u0027]), Theme(name=\u0027Wanting hopeful reassurance through symptom and recovery comparisons but finding it unproductive\u0027, description=\u0027Participants desired to compare their symptoms and recovery stories with others to find hope and reassurance. However, the wide variability of MECFS symptoms made such comparisons misleading and discouraging. They emphasized the importance of recognizing individual differences and cautioned against overreliance on symptom matching or blood test comparisons to predict recovery chances or treatment success.\u0027, code_slugs=[\u0027symptom-comparison-limitations\u0027]), Theme(name=\u0027Needing personalized recovery plans tailored to individual symptoms, lifestyle, and journeys\u0027, description=\u0027Participants highlighted that recovery from MECFS must be deeply personal, with plans tailored to individuals\u2019 unique symptoms, severity, life circumstances, and experiences. They stressed that pacing and treatments should be customized rather than adopting a one-size-fits-all approach. Building recovery plans based on one\u2019s own body and intuition fosters empowerment and supports more effective healing paths.\u0027, code_slugs=[\u0027need-for-personalized-recovery-plans\u0027]), Theme(name=\u0027Setting emotional boundaries to protect well-being when discussing difficult symptoms\u0027, description=\u0027Participants recognized the emotional toll of revisiting and discussing past symptoms through one-on-one conversations and social media interactions. They emphasized establishing boundaries to avoid overwhelming situations, protect mental health, and preserve personal space. Despite the desire to share recovery stories and receive positive feedback, they found discussions about symptoms often retraumatizing, requiring limits on symptom-focused exchanges.\u0027, code_slugs=[\u0027emotional-boundaries-around-symptom-discussion\u0027])]\nthemes=[Theme(name=\u0027Deep gratitude and awe for renewed life after chronic illness recovery\u0027, description=\u0027This theme captures the participant\\\u0027s overwhelming sense of gratitude and amazement about living a life once only dreamed of due to chronic illness recovery. They describe moments of feeling like a \"walking miracle,\" appreciating life with childlike wonder, and maintaining joy despite setbacks. This theme highlights how the participant values each day as a precious victory and reflects a profound shift in perspective and appreciation for life.\u0027, code_slugs=[\u0027walking-miracle-gratitude-for-life-38\u0027]), Theme(name=\u0027Struggle with detachment from healthy friends who take wellness for granted\u0027, description=\u0027Participants feel a sense of detachment and difficulty relating to friends who have never experienced chronic illness, especially when those friends complain about life or neglect physical health. The participant misses activities like working out and struggles to understand those who are able but unwilling to engage in wellness. This theme reflects the emotional distance and isolation felt in social relationships post-illness recovery.\u0027, code_slugs=[\u0027difficulty-relating-to-healthy-friends-81\u0027]), Theme(name=\u0027Frustration over medical misdiagnosis and delayed recognition of chronic fatigue symptoms\u0027, description=\u0027The participant recounts the prolonged and frustrating journey through misdiagnosis and dismissal by medical professionals, initially diagnosed with fibromyalgia while fatigue symptoms were overlooked. This theme underscores the experience of receiving little help or understanding over many years, contributing to a sense of neglect and uncertainty in the healthcare process.\u0027, code_slugs=[\u0027diagnosis-delay-and-misdiagnosis-60\u0027]), Theme(name=\u0027Active self-advocacy and persistence in seeking knowledgeable healthcare providers\u0027, description=\"This theme reflects the participant\u0027s proactive efforts to manage their health through self-rehabilitation, researching physicians, relocating for better care, and collaborating with investigative providers. The participant describes working with specialists who carefully examined underlying infections and genetic factors, showing determination and resourcefulness in overcoming healthcare system challenges.\", code_slugs=[\u0027self-advocacy-for-healthcare-72\u0027, \u0027genetic-condition-discovery-and-treatment-75\u0027]), Theme(name=\u0027Major lifestyle changes including diet, movement, and toxin avoidance for healing\u0027, description=\u0027Participants undertake drastic modifications such as elimination diets targeting dairy, gluten, sugar, and nightshades, coupled with gentle movement therapies and removal of environmental toxins. This theme captures the careful, individualized approach to healing through body-focused changes and gradual physical rehabilitation, emphasizing patience and persistence in recovery.\u0027, code_slugs=[\u0027drastic-lifestyle-changes-for-recovery-81\u0027, \u0027overcoming-sugar-addiction-for-healing-56\u0027, \u0027movement-therapy-as-gentle-rehab-63\u0027]), Theme(name=\u0027Personal transformation and spiritual growth through chronic illness experience\u0027, description=\u0027This theme highlights the profound psychological and spiritual shifts participants undergo, including humility, acceptance of help, redefined self-worth beyond career achievements, and a deepened faith. The illness is seen as a catalyst for personal growth, reshaping identity and spirituality, fostering gratitude, and instilling new values about life and relationships.\u0027, code_slugs=[\u0027psychological-impact-and-growth-from-illness-80\u0027, \u0027self-empowerment-through-knowledge-and-faith-64\u0027]), Theme(name=\u0027Anxiety and self-compassion in distinguishing pregnancy symptoms from relapse fears\u0027, description=\u0027Participants describe the anxiety of interpreting pregnancy-related symptoms such as fatigue and headaches within the context of past chronic illness. They emphasize the need to differentiate normal pregnancy experiences from illness relapse, practicing self-compassion and cautious optimism, while acknowledging the triggering nature of these symptoms.\u0027, code_slugs=[\u0027fear-and-anxiety-during-pregnancy-after-illness-64\u0027]), Theme(name=\u0027Hope inspired by recovery stories and community connection in chronic illness\u0027, description=\"This theme reflects the vital role of witnessing others\u0027 recovery journeys in maintaining hope and motivation. Participants stress the loneliness and despair without such examples, and the importance of shared experiences and community support for sustaining perseverance through the difficult, long recovery process of chronic illness.\", code_slugs=[\u0027hope-and-positivity-in-chronic-illness-recovery-57\u0027])]\nthemes=[Theme(name=\u0027Overwhelming fear and isolation at initial chronic fatigue onset\u0027, description=\u0027Participants describe the early stages of chronic fatigue as a scary and confusing experience, feeling a bit fluy, strange, and scared. They face emotional challenges, grief and uncertainty as symptoms emerge without clear diagnosis, compounded by isolation from friends and the university environment. The loss of normal activities and social contact leads to a tough, lonely time where only family remains as support.\u0027, code_slugs=[\u0027scary-and-confusing-early-illness-experience\u0027, \u0027feeling-isolated-due-to-illness\u0027]), Theme(name=\u0027Struggling with misdiagnosis and longing for real understanding\u0027, description=\u0027Participants recount early experiences of medical dismissal, such as doctors attributing symptoms solely to depression. They recognize the emotional impact but feel there is more going on physically. This misunderstanding leads to frustration and a strong desire to find real explanations and effective healing approaches beyond conventional medicine.\u0027, code_slugs=[\u0027rejection-of-depression-diagnosis-and-emotional-awareness\u0027]), Theme(name=\u0027Clinging to hope through meditation and fragmented relief efforts\u0027, description=\u0027Engaging in meditation, yoga, breath work, and guided relaxation offers participants temporary relief and moments of feeling better, providing hope that some control over their health is possible. Yet, these benefits are often short-lived and unstable, requiring ongoing effort to find deeper shifts in recovery.\u0027, code_slugs=[\u0027hope-from-meditation-and-yoga-practices\u0027]), Theme(name=\u0027Desperation spurs trying diverse alternative therapies seeking cure\u0027, description=\u0027Out of urgency to recover, participants try multiple alternative therapies such as acupuncture, reiki, nutrition therapy, and even colon hydrotherapy, often with mixed or limited success. This represents a willingness to explore all possible avenues despite invasiveness or skepticism, driven by a deep yearning to reclaim health.\u0027, code_slugs=[\u0027desperation-leads-to-trying-various-alternative-therapies\u0027]), Theme(name=\u0027Uncovering and releasing suppressed anger and old trauma for healing\u0027, description=\u0027Participants identify profound suppression of anger and unresolved trauma as pivotal barriers to recovery. Recognizing patterns of avoiding conflict and holding unexpressed emotions leads to emotional breakthroughs. This process helps participants address the mind-body connection and understand physical symptoms as manifestations of trauma responses, enhancing self-awareness and healing potential.\u0027, code_slugs=[\u0027realization-of-suppressed-anger-and-unresolved-trauma\u0027, \u0027mind-body-connection-and-trauma-understanding\u0027]), Theme(name=\u0027Learning to communicate authentically while setting healthy boundaries\u0027, description=\u0027Recovery journeys involve participants learning how to be authentic in expressing their feelings and needs without fearing upsetting others. Non-violent communication and boundary-setting skills help them balance self-care and relationships, moving from suppression to gentle assertiveness and honoring personal needs.\u0027, code_slugs=[\u0027learning-authentic-self-expression-and-setting-boundaries\u0027]), Theme(name=\u0027Integrating profound spiritual awakenings and meditation challenges\u0027, description=\"Spiritual experiences such as kundalini awakening, mystical meditation, and out-of-body sensations play a significant but destabilizing role in participants\u0027 recovery. While these moments connect them deeply to the universe and provide meaningful insights, they sometimes interfere with daily functioning, necessitating a balance between spiritual growth and practical life demands.\", code_slugs=[\u0027spiritual-experience-as-part-of-healing-journey\u0027]), Theme(name=\u0027Sustained self-care and emotional regulation beyond recovery\u0027, description=\u0027Even years after initial healing, participants continue to manage emotional, trauma-related, or dissociative symptoms through therapeutic work, nature exposure, and self-regulation techniques. This ongoing effort ensures balance and well-being remains, reflecting an enduring commitment to health maintenance and vigilance against relapse.\u0027, code_slugs=[\u0027ongoing-self-care-and-regulation-post-recovery\u0027]), Theme(name=\u0027Healing journey inspires career change into coaching and therapy work\u0027, description=\"The prolonged recovery experience deeply influences participants\u0027 career paths, leading them to pursue therapeutic coaching, bodywork, and modalities like internal family systems. They integrate personal healing insights professionally, remaining lifelong learners who apply supportive practices to help others on their health journeys.\", code_slugs=[\u0027career-shift-driven-by-healing-experience\u0027]), Theme(name=\u0027Recognizing ancestral trauma\u2019s influence on illness and healing paths\u0027, description=\u0027Participants acknowledge the impact of ancestral and family lineage trauma on chronic fatigue development and recovery. They observe that illness can be rooted in wider family systems rather than just personal history, gaining awareness of generational health patterns and employing family constellation approaches to understand systemic illness dynamics.\u0027, code_slugs=[\u0027recognizing-familial-and-ancestral-trauma-impact-on-health\u0027])]\nthemes=[Theme(name=\u0027Overwhelming fear and devastation from ME/CFS diagnosis and limited medical support\u0027, description=\"After the participant\u0027s diagnosis of chronic fatigue syndrome, they felt terrified and devastated, describing it as a death or life sentence with no known cure. The participant recalls bawling and feeling hopeless when doctors confirmed no cure and a need to live with symptoms, leading to a profound emotional struggle and sense of lost future, despite relief at having a diagnosis to explain their decline.\", code_slugs=[\u0027fear-and-uncertainty-after-diagnosis\u0027]), Theme(name=\u0027Frustration and resentment from imposed restrictive diets and treatments lacking personal control\u0027, description=\u0027The participant experienced misery and resentment towards strict elimination diets and numerous supplements that were recommended by doctors and natural health practitioners without their input. Feeling like these interventions were being done to them rather than with them, the participant felt these measures perpetuated trauma and hindered healing because they lacked agency and were not tailored to their needs or preferences.\u0027, code_slugs=[\u0027resentment-towards-prescribed-diets\u0027, \u0027regaining-agency-in-healing\u0027]), Theme(name=\u0027Physical symptoms triggered by trauma and sustained by nervous system hypervigilance and emotional stress\u0027, description=\"The initial trigger for the participant\u0027s illness was a traumatic sexual assault followed by infection and physical collapse, causing classic ME/CFS symptoms including 24/7 flu-like exhaustion, insomnia, brain fog, and digestive issues. This theme highlights how unresolved trauma and ongoing psychological stress maintained neurological hypervigilance, perpetuating symptoms through the brain and nervous system\u0027s stress responses despite absence of identifiable physical damage.\", code_slugs=[\u0027trauma-led-health-crisis\u0027, \u0027brain-based-explanation-for-fatigue-symptoms\u0027]), Theme(name=\u0027Finding mental peace and spiritual connection to endure symptoms and support recovery\u0027, description=\u0027Despite persistent severe symptoms, the participant attained states of mental peace and nonresistance through meditation, yoga, and spiritual practices. This deep inner calmness and connection to something greater enabled the participant to observe symptoms without emotional turmoil, serving as a vital coping mechanism and foundation for emotional healing over their long recovery journey.\u0027, code_slugs=[\u0027mental-peace-despite-physical-symptoms\u0027]), Theme(name=\u0027Healing through emotional processing, self-compassion, and releasing bottled emotions\u0027, description=\u0027Addressing emotional grief, trauma, and suppressed anger through psychotherapy, journaling, and self-compassion was crucial to the participant\u2019s recovery. Embracing kindness toward oneself softened the blow of symptoms and reduced self-criticism that activated the brain\u2019s danger signals. Expressive writing and emotional release helped alleviate the pressure cooker effect of holding in feelings, allowing nervous system recalibration.\u0027, code_slugs=[\u0027self-compassion-supporting-recovery\u0027, \u0027importance-of-emotional-processing\u0027, \u0027impact-of-personality-on-symptom-perpetuation\u0027]), Theme(name=\u0027Validation and hope from empathetic connection and new understanding of illness\u0027, description=\u0027A pivotal experience was a long conversation with someone who truly understood the illness and explained the brain and nervous system\u2019s role in perpetuating symptoms. This validation from empathetic connection sparked a spontaneous remission and instilled a profound belief in the possibility of recovery. It shifted the participant\u2019s perspective from helplessness to hopeful empowerment by conveying that recovery is possible through calming the nervous system.\u0027, code_slugs=[\u0027validation-and-hope-from-connection\u0027])]\nthemes=[Theme(name=\u0027Experiencing energy loss and frustration from inconclusive medical answers\u0027, description=\u0027Participant felt a noticeable drop in energy and motivation, describing how fatigue led to extended rest and physical symptoms like canker sores. Despite visiting doctors who confirmed their vitals and blood work as normal, the participant experienced frustration and doubt, exploring mental health as a possible cause, highlighting the emotional uncertainty accompanying unexplained symptoms.\u0027, code_slugs=[\u0027energy-loss-and-fatigue-in-cfs-long-covid\u0027, \u0027frustration-of-inconclusive-medical-tests\u0027]), Theme(name=\u0027Initial doubts and subsequent trust in brain retraining healing techniques\u0027, description=\u0027Participant was initially skeptical about hypnosis and brain retraining methods offered by the program but found commitment to these techniques effective for symptom relief and anxiety management. The journey from doubt to acceptance shows a shift in mindset, embracing unconventional healing that fundamentally changed their approach to recovery.\u0027, code_slugs=[\u0027initial-skepticism-of-brain-retraining-technique\u0027]), Theme(name=\u0027Building mental stamina and positive mindset for physical recovery challenges\u0027, description=\u0027The participant highlighted the importance of developing mental stamina and adopting positive affirmations, enabling progression from basic daily functioning to running 10K races and training for marathons. This growth mindset and empowerment were pivotal in sustaining motivation and embracing physical challenges beyond previous limits.\u0027, code_slugs=[\u0027importance-of-mental-stamina-for-active-recovery\u0027]), Theme(name=\u0027Finding motivation through personal encouragement and belief from support\u0027, description=\u0027Participant valued the personalized, encouraging support they received from their coach, which boosted motivation and belief in recovery despite ongoing challenges. Regular texts and genuine belief from someone invested, even as a stranger, made a meaningful difference in maintaining hope and progress.\u0027, code_slugs=[\u0027valuing-supportive-encouragement-in-recovery\u0027]), Theme(name=\u0027Adopting empowering self-talk to transform anxiety into recovery progress\u0027, description=\"The participant discovered replacing disempowering anxiety statements with affirmations like \u0027I am on my way to getting better\u0027 fostered a positive, hopeful mindset. This shift transformed their experience of anxiety from feeling stuck to seeing it as a stage in an ongoing health journey, supporting emotional resilience.\", code_slugs=[\u0027developing-empowering-self-statements\u0027]), Theme(name=\u0027Accepting recovery as a continuous journey with tools for setbacks\u0027, description=\u0027Participant recognized recovery as an ongoing journey rather than a fixed, fully cured state, understanding that life will bring stress and anxious moments. They emphasized having tools to manage symptoms and refocus, cultivating confidence to maintain progress and face fluctuations without fear or discouragement.\u0027, code_slugs=[\u0027recognizing-the-journey-of-recovery-not-a-fix\u0027])]\nthemes=[Theme(name=\u0027Living with isolation and frustration from long COVID symptoms\u0027, description=\"This theme captures participants\u0027 feelings of being drained and disconnected due to persistent symptoms that limit physical and social activities. They express frustration with ongoing symptoms that drag them down and the emotional toll of feeling alone because others don\u0027t see or understand their daily struggle.\", code_slugs=[\u0027long-covid-frustration-and-isolation\u0027]), Theme(name=\u0027Seeking empathy and validation from family, doctors, and society\u0027, description=\u0027Participants strongly desire recognition and belief in their experiences with long COVID and ME/CFS. They emphasize how validation from doctors, family, and others is crucial to reduce feelings of stigmatization and misunderstanding, providing essential emotional support and helping them feel that their condition is real and acknowledged.\u0027, code_slugs=[\u0027desire-for-understanding-and-validation\u0027]), Theme(name=\u0027Yearning to recover physical strength and resume normal activities\u0027, description=\u0027There is a poignant longing among participants to regain lost physical energy and return to activities they once enjoyed, such as jogging, playing with children, and routine tasks. The overwhelming fatigue makes even simple tasks difficult, and participants express a strong need to feel like themselves by restoring their physical function and vitality.\u0027, code_slugs=[\u0027need-to-regain-physical-energy-and-function\u0027]), Theme(name=\u0027Persistent search for treatments that bring relief and hope for cure\u0027, description=\u0027Participants describe the emotional toll of trying many treatments without success, expressing heartbreak and disappointment. They maintain hope for an effective cure or therapy that will relieve symptoms, stop the pain and fatigue, and allow them to move forward with life beyond their illness.\u0027, code_slugs=[\u0027search-for-effective-treatment-and-cures\u0027]), Theme(name=\u0027Struggling with sense of self and identity after illness onset\u0027, description=\"This theme reflects participants\u0027 internal conflict as they mourn their healthy pre-illness identity and grapple with new limitations that alter their roles and self-perception. They speak to the difficulty of accepting these changes and feeling like they have lost their former selves amid the chronic illness experience.\", code_slugs=[\u0027coping-with-identity-changes\u0027])]\nthemes=[Theme(name=\u0027Experiencing anger and anxiety as uncontrollable physiological survival responses\u0027, description=\"Participants experience anger and anxiety not as psychological issues but as automatic fight or flight sensations generated by their body. These physiological survival responses drive chronic pain and related symptoms, overpowering conscious control and leading to deep frustration and feeling trapped by their body\u0027s intense reactions and threat states.\", code_slugs=[\u0027anger-fight-flight-physiology-chronic-pain\u0027, \u0027threat-physiology-explains-chronic-symptoms\u0027, \u0027role-of-physiology-over-conscious-control\u0027]), Theme(name=\u0027Living with chronic pain as a persistent brain-embedded memory and changing the pain relationship\u0027, description=\u0027Participants perceive chronic pain as an embedded memory circuit in their brain that cannot be erased, similar to phantom limb pain. Fighting this pain reinforces the circuits, but by separating themselves from the pain and accepting it, they begin to transcend the pain and create new neural pathways, enabling them to live on their own terms despite persistent symptoms.\u0027, code_slugs=[\u0027chronic-pain-neuroplasticity-memory-pain-circuits\u0027, \u0027letting-go-fighting-pain-key-to-healing\u0027]), Theme(name=\u0027Struggling with repetitive negative thoughts and learning to separate from them to reduce distress\u0027, description=\u0027Participants face distressing repetitive negative thoughts that fuel anxiety and chronic symptoms. They describe using tools like expressive writing and mindfulness to separate their identity from these thoughts, reducing physiological arousal and suffering. This process is crucial to breaking cycles of mental rigidity and anger that block healing.\u0027, code_slugs=[\u0027separation-from-negative-thoughts-in-pain\u0027]), Theme(name=\u0027Finding joy and safety as essential pathways to healing beyond pain and stress\u0027, description=\u0027Participants emphasize nurturing joy through positive experiences, relationships, and a playful curious attitude to counterbalance threat physiology. They find that embodying safety physiology by managing nervous system stress, prioritizing sleep, diet, and exercise, and interpersonal support creates a state where the body can heal itself and symptoms resolve, enabling a thriving life beyond chronic illness.\u0027, code_slugs=[\u0027nurturing-joy-for-chronic-pain-healing\u0027, \u0027importance-of-sleep-diet-exercise-in-nervous-system-calm\u0027]), Theme(name=\u0027Embracing skepticism and curiosity as starting points for holistic healing engagement\u0027, description=\u0027Participants express that embracing skepticism rather than blind belief is an important initial step. Connecting with one\u2019s doubts encourages curiosity and open-minded learning, which helps people engage in the self-directed skill acquisition needed to calm their physiology, interrupt negative cycles, and progress towards symptom improvement and healing.\u0027, code_slugs=[\u0027skepticism-as-starting-point-for-healing-engagement\u0027]), Theme(name=\u0027Understanding unconscious brain dominance in managing chronic symptoms and survival\u0027, description=\u0027Participants highlight how the unconscious brain processes millions of bits of sensory information per second to maintain survival and drive responses that the conscious brain cannot override. This explains the difficulty in controlling chronic symptoms through willpower alone, as unconscious physiological threat states dominate symptom experience and reactions.\u0027, code_slugs=[\u0027role-of-unconscious-brain-in-survival-and-pain\u0027])]\nthemes=[Theme(name=\u0027Discovering hope and healing through transformative recovery books\u0027, description=\"Participants express a profound sense of hope and inspiration upon discovering pivotal recovery books, such as Dr. John Sarno\u0027s work, that deeply resonate with their symptoms and personality traits. These books not only helped them overcome chronic pain and other health issues but also shaped their therapeutic journeys, offering an accessible entry point to understanding their complex experiences and fostering meaningful change.\", code_slugs=[\u0027book-as-key-to-chronic-pain-recovery\u0027]), Theme(name=\u0027Experiencing core healing by accessing and processing suppressed emotions\u0027, description=\u0027Participants describe their emotional healing journey centered on emotion-focused therapy, particularly ISTDP, which enables them to safely access, experience, and process suppressed emotions like anger and rage. This process reveals how physical pain manifests from blocked emotions, helping them develop new emotional capacities and gradually dismantle defense mechanisms, ultimately leading to physical and emotional relief.\u0027, code_slugs=[\u0027emotion-focused-therapy-for-pain\u0027, \u0027emotions-understood-as-physical-pain-source\u0027]), Theme(name=\u0027Facing challenges of fear and distrust in engaging deeply with therapy\u0027, description=\u0027Participants share the difficulties in engaging with intensive emotion-focused therapy, noting fears, defensive behaviors, and trust issues that create barriers. They emphasize the slow and supportive process needed to expand their emotional thresholds while avoiding setbacks, highlighting the hard work involved in gradually confronting painful emotions that are integral to recovering from chronic pain.\u0027, code_slugs=[\u0027barriers-to-therapy-engagement-and-trust\u0027]), Theme(name=\u0027Feeling validated and hopeful from growing medical recognition of pain therapy\u0027, description=\u0027Participants feel encouraged and validated as emotion-focused therapy gains acceptance among medical professionals, contrasting with earlier stigma. They describe increased doctor referrals, training opportunities, and scientific research backing, which fosters hope for broader systemic change and better integration of effective approaches into mainstream medical practice for chronic pain and related conditions.\u0027, code_slugs=[\u0027transformation-in-professional-acceptance\u0027]), Theme(name=\u0027Adapting mindset to accept therapy as essential part of physical healing\u0027, description=\u0027Participants reflect on the difficult yet crucial mental shift from viewing therapy as mere coping to recognizing it as an essential healing route. This shift involves breaking down the false divide between mental and physical health and embracing an integrated approach. They recount how this changed perspective enables them to commit more fully to emotion-focused treatments as pathways to recovery beyond just symptom management.\u0027, code_slugs=[\u0027mindset-shift-needed-for-therapy-acceptance\u0027])]",
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"output": "Codes to keep for final CodeList:\n- Persistent fatigue and energy drain on standing\n- Overexertion leading to relapse and worsening symptoms\n- Relentless pushing through fatigue despite physical limits\n- Realization and acceptance of necessary lifestyle changes\n- Embracing brain retraining as a key to recovery\n- Learning to set boundaries to manage energy and avoid overcommitment\n- Difficulty with relaxation and understanding true rest\n- Frustration and occasional anger toward others\u2019 misunderstanding of illness\n- Maintaining hope and positivity despite chronic illness challenges\n- Developing self-awareness to avoid overexertion and manage symptoms\n- Focusing on holistic recovery instead of individual symptoms\n- Desire for symptom comparison but finding it unhelpful\n- Using symptom management mainly for comfort rather than recovery\n- Need to tailor recovery plans individually to each person\u0027s lifestyle and journey\n- Frustration and disappointment from focusing on symptom-specific fixes\n- Setting emotional boundaries around discussing past symptoms\n- Walking miracle gratitude for life after chronic illness\n- Difficulty relating to healthy friends post illness\n- Frustration with delayed diagnosis and misdiagnosis\n- Self advocacy and research to access better healthcare\n- Discovery and treatment of genetic mitochondrial disease\n- Drastic lifestyle changes including diet and environment for recovery\n- Overcoming intense sugar addiction to support healing\n- Movement therapy as gentle rehabilitation rather than exercise\n- Psychological impact and personal growth from chronic illness experience\n- Fear and anxiety about pregnancy symptoms being illness relapse\n- Hope and positivity through seeing others recover from chronic illness\n- Self empowerment through knowledge acquisition and faith in recovery\n- Scary and confusing early illness experience\n- Feeling isolated due to illness\n- Rejection of depression diagnosis and emotional awareness\n- Hope from meditation and yoga practices\n- Desperation leads to trying various alternative therapies\n- Realization of suppressed anger and unresolved trauma\n- Mind-body connection and trauma understanding\n- Learning authentic self-expression and setting boundaries\n- Spiritual experience as part of healing journey\n- Ongoing self-care and regulation post recovery\n- Career shift driven by healing experience\n- Recognizing familial and ancestral trauma impact on health\n- Trauma leading to sudden health crisis and exhaustion\n- Fear and uncertainty following chronic fatigue syndrome diagnosis\n- Resentment towards restrictive diets imposed in treatment\n- Regaining personal agency and control in healing journey\n- Experiencing mental peace while symptoms persist\n- Adopting brain and nervous system explanation for ME/CFS symptoms\n- Cultivating self-compassion to manage symptoms and aid recovery\n- Role of personality traits like perfectionism in illness experience\n- Acknowledging and processing emotions as key to recovery\n- Finding validation and hope through empathetic connection\n- Energy loss and fatigue reducing daily activity\n- Frustration from inconclusive medical investigations\n- Initial skepticism towards brain retraining techniques\n- Importance of mental stamina for physical activity recovery\n- Valuing supportive and personal encouragement during recovery\n- Developing empowering self-statements to combat anxiety\n- Recognizing recovery as a journey, not a fixed state\n- Feeling frustrated and isolated due to long COVID limitations\n- Desire for understanding and validation from others\n- Need to regain physical energy and return to normal function\n- Search for effective treatment and cures for symptom relief\n- Coping with changes to identity and sense of self\n- Anger as fight or flight physiology driving chronic pain\n- Chronic pain as embedded memory in neuroplastic pain circuits\n- Unconscious brain drives survival responses and chronic symptoms\n- Letting go of fighting pain as crucial to healing process\n- Threat physiology underlies chronic mental and physical symptoms\n- Separating oneself from negative and repetitive thoughts\n- Nurturing joy as a vital part of healing journey\n- Importance of sleep diet and exercise for calming nervous system\n- Physiology\u0027s dominance over conscious brain in symptom experience\n- Using skepticism as a starting point to engage in healing\n- Book as key to chronic pain recovery approach\n- Emotion-focused therapy as core to pain recovery process\n- Barriers to engaging with emotion-focused therapy include fear and trust issues\n- Growing acceptance of emotion-focused therapy among medical professionals\n- Mindset shift required for accepting therapy as part of recovery\n- Understanding emotions as the source of physical pain",
"prompt": "You are a: Experienced qual researcher\n\nNone\n\nWe are now going to rationalise the set of codes identified across multiple documents. We will consolidate into a single CodeList.\n\n## Preliminary codes\n\n\u003ctext\u003e\ncodes=[Code(slug=\u0027persistent-fatigue-and-energy-drain\u0027, name=\u0027Persistent fatigue and energy drain on standing\u0027, description=\u0027Participant describes extreme exhaustion and a complete drain of energy when trying to stand after lying down, leading to being bedridden for 18 months. This fatigue persisted with partial recovery but never complete, impacting daily functioning for many years.\u0027, quotes=[\"\u0027i was there for the next eighteen months was in bed ... i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely\u0027\", \"\u0027i was able to live a fairly good life but always tired constantly tired\u0027\"]), Code(slug=\u0027overexertion-and-relapse-cycle\u0027, name=\u0027Overexertion leading to relapse and worsening symptoms\u0027, description=\u0027Participant describes a cycle of pushing herself too hard (e.g. walking excessively) which led to picking up viruses and relapse back to debilitating fatigue forcing retirement and severe activity limitations.\u0027, quotes=[\"\u0027then i started overdoing things again i was walking like ten miles every day ... i picked up a couple of viruses ... i woke up ... i just can\u0027t get out of bed i can\u0027t do this again\u0027\", \"\u0027i actually had to retire at that stage and then being retired ... i kept pushing myself pushing myself\u0027\"]), Code(slug=\u0027relentless-pushing-despite-limitations\u0027, name=\u0027Relentless pushing through fatigue despite physical limits\u0027, description=\u0027Despite exhaustion and physical inability to perform basic tasks, participant kept pushing herself to walk and exercise daily, even waking early to get dressed for walking before breakfast, leading to further energy depletion.\u0027, quotes=[\"\u0027i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes ... were in the bathroom ... i just went walking i\u0027d be back by seven eight nine o\u0027clock\u0027\", \"\u0027then i couldn\u0027t really do anything for myself ... i had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else\u0027\"]), Code(slug=\u0027realization-to-accept-lifestyle-changes\u0027, name=\u0027Realization and acceptance of necessary lifestyle changes\u0027, description=\u0027Participant early on did not accept diagnosis fully, maintained denial to an extent, but later realized she needed to make significant lifestyle changes to manage her illness rather than hoping to return to previous activity levels.\u0027, quotes=[\"\u0027i\u0027m not going to give into it but i am going to have to make life changes ... my life is going to have to change from that point of view\u0027\", \"\u0027part of it was just ignorance be part of it\u0027\"]), Code(slug=\u0027brain-retraining-as-a-recovery-path\u0027, name=\u0027Embracing brain retraining as a key to recovery\u0027, description=\"Initial skepticism toward brain retraining shifted to acceptance after understanding it addressed body\u2019s protective response and mental \u0027fight or flight\u0027 mode, leading to participation in program and positive initial results within two weeks.\", quotes=[\"\u0027my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain\u0027\", \"\u0027when he explaining ... your body has switched down some of the genes ... you\u0027re stuck in this fight too much ... it just started making sense\u0027\", \"\u0027i contacted jason and went onto his program because it actually really made sense\u0027\"]), Code(slug=\u0027learning-boundaries-to-manage-energy\u0027, name=\u0027Learning to set boundaries to manage energy and avoid overcommitment\u0027, description=\u0027Participant emphasizes importance of setting personal boundaries like letting phone calls go to voicemail to prevent energy drain and managing social demands, as well as self-monitoring to stop before reaching exhaustion.\u0027, quotes=[\"\u0027if my phone rings i let it go to voicemail so i can deal with it when i want to\u0027\", \"\u0027learning boundaries the hardest for me was learning boundaries\u0027\"]), Code(slug=\u0027difficulty-with-relaxation-and-rest\u0027, name=\u0027Difficulty with relaxation and understanding true rest\u0027, description=\"Participant struggles with relaxation practices like meditation and acknowledges need to retrain herself to understand and accept \u0027real rest\u0027 familiar to healthy individuals but challenging for her to implement consistently.\", quotes=[\"\u0027i\u0027m not good at relaxing ... people say do meditation and this meditation is something i just ... struggled with it\u0027\", \"\u0027now i make myself every day lay down and take a nap or do some meditation ... i\u0027m like real rest\u0027\"]), Code(slug=\u0027frustration-with-misunderstanding-by-others\u0027, name=\u0027Frustration and occasional anger toward others\u2019 misunderstanding of illness\u0027, description=\u0027Participant feels annoyed and flares up when people minimize or misunderstand her illness or recovery, particularly those who never had the illness or who judge her lifestyle choices, emphasizing emotional toll of misunderstanding.\u0027, quotes=[\"\u0027when people say silly things sometimes ... i can flare up\u0027\", \"\u0027i know what i\u0027ve been through ... when somebody minimizes it you can think no\u0027\"]), Code(slug=\u0027maintaining-hope-and-positivity-despite-chronic-illness\u0027, name=\u0027Maintaining hope and positivity despite chronic illness challenges\u0027, description=\u0027Participant highlights her positive and obstinate personality as key factors in her refusal to accept permanent disability and her sustained belief in recovery and improvement despite long-term severe illness.\u0027, quotes=[\"\u0027i\u0027m just a very positive person i think i\u0027m also obstinate\u0027\", \"\u0027never ever felt ... i was almost like in denial\u0027\"]), Code(slug=\u0027self-awareness-to-avoid-overexertion\u0027, name=\u0027Developing self-awareness to avoid overexertion and manage symptoms\u0027, description=\u0027Participant stresses importance of listening to body signals, recognizing triggers, and adjusting activities in timely fashion to prevent relapse and maintain health improvements.\u0027, quotes=[\"\u0027i\u0027ve learnt to listen to myself listen to my body ... work out what my triggers are\u0027\", \"\u0027i can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries\u0027\"])]\ncodes=[Code(slug=\u0027holistic-recovery-focus-mecfs\u0027, name=\u0027Focusing on holistic recovery instead of individual symptoms\u0027, description=\u0027Participants described the importance of focusing on overall body support and holistic healing in managing MECFS rather than trying to treat each symptom individually. Trying to treat isolated symptoms was seen as overwhelming and ineffective, while a comprehensive approach contributed to gradual recovery.\u0027, quotes=[\u0027...my recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole...\u0027, \u0027...targeting the specific symptoms was never healing them in my experience...\u0027, \u0027...i pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone...\u0027]), Code(slug=\u0027symptom-comparison-limitations\u0027, name=\u0027Desire for symptom comparison but finding it unhelpful\u0027, description=\u0027Participants expressed wanting to compare their symptoms with others to find reassurance or hopeful signs of recovery, but found this approach often unhelpful or even misleading. They noted that MECFS symptoms vary widely across individuals, making direct symptom comparisons unproductive and potentially discouraging.\u0027, quotes=[\"...people want to compare their symptoms against mine... to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope...\", \"...if someone is sizing up their illness against my illness and it doesn\u0027t match exactly... that means that they do not have a chance of recovering...\", \"...don\u0027t get too caught up on comparing symptoms... scanning information for what were their test results... it probably won\u0027t help you personally...\"]), Code(slug=\u0027symptom-management-as-palliation-not-cure\u0027, name=\u0027Using symptom management mainly for comfort rather than recovery\u0027, description=\u0027Participants described symptom management during MECFS as largely palliative\u2014to ease discomfort\u2014not a path to cure. Painkillers, sedatives, and other symptom treatments helped manage the suffering temporarily but did not address the underlying illness, which required a broader healing strategy.\u0027, quotes=[\u0027...symptom management that i did was more palliative and not so much about recovery...\u0027, \u0027...if i had pain i might take painkillers or if i was having really bad problems with sleeping... i might go see my doctor and get some prescription sedatives...\u0027, \u0027...targeting the specific symptoms was never healing them in my experience...\u0027]), Code(slug=\u0027need-for-personalized-recovery-plans\u0027, name=\"Need to tailor recovery plans individually to each person\u0027s lifestyle and journey\", description=\"Participants highlighted the importance of creating personalized recovery plans tailored to each individual\u0027s unique symptoms, lifestyle, and disease experience. Recovery methods that worked for one person might not work for another, and pacing and treatments should be adapted accordingly.\", quotes=[\"...somebody\u0027s recovery plan and them selecting the things they want to try needs to be tailored as well...\", \u0027...pacing has to be tailored individually for a particular person because their life is so different...\u0027, \u0027...look at your own life like a scientist without freaking out about everything...\u0027]), Code(slug=\u0027frustration-with-symptom-focused-help-seeking\u0027, name=\u0027Frustration and disappointment from focusing on symptom-specific fixes\u0027, description=\u0027Participants shared feelings of desperation, frustration, and disillusionment from seeking specific symptom fixes through extensive research, treatments, and comparisons. Many attempts, including costly and risky interventions, failed to provide holistic healing, leading to emotional exhaustion and the need to find alternative strategies.\u0027, quotes=[\u0027...i spent thousands of hours googling my symptoms...\u0027, \u0027...this led me to spend thousands of dollars... i almost poisoning myself by buying organic elderberries...\u0027, \"...i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one...\"]), Code(slug=\u0027emotional-boundaries-around-symptom-discussion\u0027, name=\u0027Setting emotional boundaries around discussing past symptoms\u0027, description=\u0027Participants expressed the need to set boundaries around conversations about symptoms, including avoiding one-on-one symptom troubleshooting. Sharing their recovery stories was positive but revisiting symptoms was traumatic and could be overwhelming, necessitating limits to preserve well-being.\u0027, quotes=[\u0027...i now have boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either...\u0027, \"...writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there...\", \u0027...consider that people who share their stories are still human and it might still be fresh their challenges on their journey...\u0027])]\ncodes=[Code(slug=\u0027walking-miracle-gratitude-for-life-38\u0027, name=\u0027Walking miracle gratitude for life after chronic illness\u0027, description=\u0027This code captures the deep appreciation and awe the participant feels about living a life they once only dreamed of due to recovering from chronic illness. They describe moments of enjoying life with childlike wonder and being grateful each day despite small setbacks.\u0027, quotes=[\"I\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible\", \"this joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\", \"It\u0027s like being like when you watch a six year old wandering through the world ... these new eyes where you just get to almost be childlike again\"]), Code(slug=\u0027difficulty-relating-to-healthy-friends-81\u0027, name=\u0027Difficulty relating to healthy friends post illness\u0027, description=\u0027The participant experiences detachment and struggle maintaining friendships with physically healthy friends who complain about their lives. They find it hard to relate to people who seem to take their health for granted and have difficulty understanding those who choose not to engage in activities like working out, which the participant once loved but had to give up.\u0027, quotes=[\"It is hard though to have friends who\u0027ve never been through it ... and they complain about their lives and i just feel such a detachment sometimes\", \"Sometimes it\u0027s hard for me to be their friend now because I\u0027m like you have it all\", \u0027I really struggle with people who seem physically able to go to the gym but just choose not to\u0027, \"I would give anything to (work out) because i love working out so that\u0027s one of my things that i really miss\"]), Code(slug=\u0027diagnosis-delay-and-misdiagnosis-60\u0027, name=\u0027Frustration with delayed diagnosis and misdiagnosis\u0027, description=\"The participant recounts the challenges in receiving an accurate diagnosis. Initially diagnosed with fibromyalgia, their fatigue symptoms were overlooked which delayed appropriate treatment. They express frustration with the medical system\u0027s lack of understanding and care for their chronic fatigue symptoms over many years.\", quotes=[\u0027I was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued\u0027, \"no one would even really treat it i don\u0027t think they really what to do\", \u0027It took a while before i even got the chronic fatigue diagnosis but no one would even really treat it for many years\u0027]), Code(slug=\u0027self-advocacy-for-healthcare-72\u0027, name=\u0027Self advocacy and research to access better healthcare\u0027, description=\u0027The participant took an active role in managing their health by rehabilitating themselves, researching doctors, and eventually moving to access better medical care. They found a nurse practitioner who performed comprehensive blood work and helped identify underlying infections. This proactive approach was crucial for their eventual diagnosis and treatment plan.\u0027, quotes=[\u0027I kept rehabilitate myself ... researching doctors researching as much as i could\u0027, \"Eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors\", \u0027She was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that\u0027]), Code(slug=\u0027genetic-condition-discovery-and-treatment-75\u0027, name=\u0027Discovery and treatment of genetic mitochondrial disease\u0027, description=\u0027The participant was diagnosed with a rare mitochondrial disease through full genome testing. This diagnosis explained their inability to fight infections and fatigue. Treatment included a mitochondrial cocktail which helped their body produce mitochondria and regain strength to combat infections, marking a turning point in their recovery.\u0027, quotes=[\u0027I did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven\u0027, \"He put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections\", \u0027By him supplementing and boosting my mitochondria i could now fight the infections\u0027]), Code(slug=\u0027drastic-lifestyle-changes-for-recovery-81\u0027, name=\u0027Drastic lifestyle changes including diet and environment for recovery\u0027, description=\u0027The participant emphasizes the importance of significant lifestyle modifications for healing including an elimination diet, gradual movement rehabilitation, and removing environmental toxins. Specific dietary changes involved cutting out dairy, gluten, sugar, and nightshades, which were once inflammatory but sometimes reintroduced gradually.\u0027, quotes=[\u0027I had to dramatically change my diet ... use food as medicine as a mindset\u0027, \u0027I removed all toxic ingredients immunotoxic i water filtration system on my house\u0027, \u0027Dairy gluten and sugar were main offenders and nightshades bothered me for a while\u0027]), Code(slug=\u0027overcoming-sugar-addiction-for-healing-56\u0027, name=\u0027Overcoming intense sugar addiction to support healing\u0027, description=\u0027The participant describes an intense physical addiction to sugar that disrupted their health and sleep patterns. Through gut healing and probiotics, cravings diminished, allowing them to develop a healthier relationship with food and regain control over their eating habits, marking an important step in recovery.\u0027, quotes=[\u0027Sugar was a massive one for me and sugar was a tough one for me ... i clearly had a physical addiction\u0027, \u0027I would get up in the middle of the night every single night and eat sugar\u0027, \u0027Once my body started healing the cravings went away\u0027]), Code(slug=\u0027movement-therapy-as-gentle-rehab-63\u0027, name=\u0027Movement therapy as gentle rehabilitation rather than exercise\u0027, description=\u0027The participant highlights the importance of very gradual and gentle movement therapy rather than typical exercise. They emphasize the challenges of balancing activity and rest in chronic fatigue syndrome, noting that even a few minutes of movement can be critical for oxygenation and lymphatic flow while avoiding pushing to the point of relapse.\u0027, quotes=[\u0027I had to gradually increase my ability to move\u0027, \u0027My exercise program was so small you know it was one to two minutes a day and in the beginning not even every single day\u0027, \u0027I couldn\u2019t rest my way out of this i couldn\u2019t just lay in bed or lay on the couch all day\u0027]), Code(slug=\u0027psychological-impact-and-growth-from-illness-80\u0027, name=\u0027Psychological impact and personal growth from chronic illness experience\u0027, description=\u0027The participant reflects on how chronic illness fundamentally changed their identity, values, and spirituality. They describe feelings of humility, acceptance, and deeper self-worth beyond professional achievements. The illness brought perspective, spiritual growth, gratitude, and a renewed appreciation for life and relationships.\u0027, quotes=[\u0027It humbled me changed me i maybe was prideful before i wouldn\u2019t say i had a spirituality before\u0027, \u0027I had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\u0027, \u0027this illness catapults our growth and puts us in a better direction\u0027]), Code(slug=\u0027fear-and-anxiety-during-pregnancy-after-illness-64\u0027, name=\u0027Fear and anxiety about pregnancy symptoms being illness relapse\u0027, description=\u0027The participant shares the anxiety and uncertainty during pregnancy about whether normal pregnancy symptoms like fatigue and headaches signal illness relapse. They learn to differentiate normal pregnancy experiences from chronic illness symptoms, practicing self-compassion and cautious optimism about their health journey.\u0027, quotes=[\"I keep reminding myself these are normal symptoms it\u0027s triggering sometimes to be like is this normal fatigue or is this going back\", \u0027I keep reminding myself no it\u2019s normal to have headaches when you\u2019re pregnant it\u2019s normal to feel tired\u0027, \u0027It has been quite a journey i keep reminding myself sometimes\u0027]), Code(slug=\u0027hope-and-positivity-in-chronic-illness-recovery-57\u0027, name=\u0027Hope and positivity through seeing others recover from chronic illness\u0027, description=\u0027The participant expresses how seeing recovery stories from others provides essential hope and motivation for their own healing journey. They highlight the loneliness and despair without such examples and stress the importance of community and shared experiences in sustaining perseverance through chronic illness.\u0027, quotes=[\"It\u0027s so nice to see so many people that are getting past these things\", \u0027I remember when i first got sick i was trying to find recovery stories and i just couldn\u2019t find any\u0027, \"People start reaching out to me it\u0027s crazy like hey so nice to meet you you recovered as well\"]), Code(slug=\u0027self-empowerment-through-knowledge-and-faith-64\u0027, name=\u0027Self empowerment through knowledge acquisition and faith in recovery\u0027, description=\"The participant credits their recovery journey to extensive self-education about their condition combined with their faith and spiritual trust. They emphasize the importance of trusting the healing process and rejecting limiting prognoses, comparing learning about illness to earning a \u0027bachelor\u2019s degree\u0027 in chronic illness.\", quotes=[\u0027I would just tell myself to trust that process\u0027, \u0027I had to go through all those years of research and learning\u0027, \u0027It was like getting a bachelor\u2019s degree in chronic illness\u0027, \u0027You cannot limit a limitless guy\u0027])]\ncodes=[Code(slug=\u0027scary-and-confusing-early-illness-experience\u0027, name=\u0027Scary and confusing early illness experience\u0027, description=\u0027Participant describes the initial onset of chronic fatigue as confusing, frightening, and strange with symptoms that were hard to understand and manage. She was overwhelmed by sudden health decline and had to leave university, indicating a disruptive and scary period.\u0027, quotes=[\"i just didn\u0027t feel well at all... felt a bit fluy felt a bit strange felt a bit scared because it felt really weird\", \"i didn\u0027t know what was going on\", \"it was a really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed\"]), Code(slug=\u0027feeling-isolated-due-to-illness\u0027, name=\u0027Feeling isolated due to illness\u0027, description=\u0027Participant felt isolated because she had to return home and was separated from her friends who were still attending university, leading to feelings of loneliness with limited social support beyond family.\u0027, quotes=[\"all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family\", \u0027it was a very tough time\u0027]), Code(slug=\u0027rejection-of-depression-diagnosis-and-emotional-awareness\u0027, name=\u0027Rejection of depression diagnosis and emotional awareness\u0027, description=\"Participant rejected doctors\u0027 initial diagnosis of depression as the sole cause, sensing a deeper underlying physical illness despite emotional challenges and some depressive feelings related to her illness.\", quotes=[\u0027one of the first doctors said she just thought i was depressed that was it\u0027, \"i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell\"]), Code(slug=\u0027hope-from-meditation-and-yoga-practices\u0027, name=\u0027Hope from meditation and yoga practices\u0027, description=\u0027Early engagement with meditation, yoga, and breath work brought short-lived improvements, offering participant moments of hope and relief, though benefits were often temporary and inconsistent over long recovery.\u0027, quotes=[\u0027i thought i did think quite early on well perhaps meditation and yoga can help me heal\u0027, \u0027doing the alternate nostril breathing and noticing i felt different after doing it\u0027, \"sometimes i\u0027d notice i felt considerably better after doing one\"]), Code(slug=\u0027desperation-leads-to-trying-various-alternative-therapies\u0027, name=\u0027Desperation leads to trying various alternative therapies\u0027, description=\u0027Participant pursued numerous alternative therapies out of desperation including acupuncture, reiki, nutrition therapy, and colon hydrotherapy, often with limited or mixed success, reflecting urgent search for a cure.\u0027, quotes=[\"i\u0027d go for reiki and i\u0027d go for this and i go for that\", \u0027i even flew to america...to work with a healer\u0027, \u0027just loads of things i was i was so desperate to be well\u0027]), Code(slug=\u0027realization-of-suppressed-anger-and-unresolved-trauma\u0027, name=\u0027Realization of suppressed anger and unresolved trauma\u0027, description=\u0027Participant identified a deep pattern of suppressing anger and unreleased trauma impacting her recovery, acknowledging emotional blocks and the role of unresolved feelings in her physical symptoms.\u0027, quotes=[\"i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\", \u0027one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs\u0027]), Code(slug=\u0027mind-body-connection-and-trauma-understanding\u0027, name=\u0027Mind-body connection and trauma understanding\u0027, description=\u0027Participant found significant healing through acknowledging the mind-body link, understanding symptoms as manifestations of trauma such as freeze responses, and exploring emotional triggers underlying physical states.\u0027, quotes=[\u0027it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom\u0027, \u0027a lot of it was the impact of trauma on my system manifesting physically like a freeze response\u0027, \u0027started to really understand the mind body connection\u0027]), Code(slug=\u0027learning-authentic-self-expression-and-setting-boundaries\u0027, name=\u0027Learning authentic self-expression and setting boundaries\u0027, description=\u0027Recovery involved learning to express authentic emotions and needs without fear of upsetting others, using communication skills like non-violent communication to balance self-care and relationships.\u0027, quotes=[\u0027learning to be more myself more authentic\u0027, \u0027learning non violent communication... a way that i could communicate my feelings without it also being too much for someone else\u0027, \"it\u0027s okay to have needs\"]), Code(slug=\u0027spiritual-experience-as-part-of-healing-journey\u0027, name=\u0027Spiritual experience as part of healing journey\u0027, description=\u0027Spiritual awakening, meditation, and mystical experiences were deeply meaningful but sometimes destabilizing aspects of the recovery journey, requiring learning to balance spiritual insights with daily functioning.\u0027, quotes=[\u0027i had a kundalini or spiritual some kind of spiritual awakening\u0027, \u0027sometimes i felt like i left my body and i was like connecting with the whole universe\u0027, \u0027i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way\u0027]), Code(slug=\u0027ongoing-self-care-and-regulation-post-recovery\u0027, name=\u0027Ongoing self-care and regulation post recovery\u0027, description=\u0027Even years after recovery, participant still needed to manage emotional and trauma-related symptoms with self-regulation strategies like nature exposure and therapeutic work to maintain balance and well-being.\u0027, quotes=[\u0027i did have periodically sort of what i would now describe as trauma type symptoms\u0027, \"i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature\", \u0027that can still happen today but not to the extent it was\u0027]), Code(slug=\u0027career-shift-driven-by-healing-experience\u0027, name=\u0027Career shift driven by healing experience\u0027, description=\"Participant\u0027s prolonged healing journey influenced her career choice toward coaching and therapeutic work, integrating personal recovery insights into professional roles and continuous learning.\", quotes=[\"i\u0027ve done lots of different kinds of therapeutic and coaching trainings\", \u0027been working in this field myself nearly twenty years\u0027, \u0027i do keep up quite a few of the practices that support me to heal and new practices\u0027]), Code(slug=\u0027recognizing-familial-and-ancestral-trauma-impact-on-health\u0027, name=\u0027Recognizing familial and ancestral trauma impact on health\u0027, description=\u0027Participant highlights the role of ancestral and family line trauma influencing illness patterns, recognizing wider systemic and generational factors contributing to chronic fatigue symptoms.\u0027, quotes=[\"a lot of my trauma wasn\u0027t necessarily personal but was ancestral... took on from my family line\", \u0027sometimes... an illness in one person might not be the root but a wider family system issue\u0027])]\ncodes=[Code(slug=\u0027trauma-led-health-crisis\u0027, name=\u0027Trauma leading to sudden health crisis and exhaustion\u0027, description=\u0027Participant describes a traumatic sexual assault and subsequent intense physical illness (urinary tract infection during long flight) that triggered sudden, severe exhaustion and ME/CFS symptoms such as insomnia, brain fog, and digestive issues lasting for years.\u0027, quotes=[\"i was sexually assaulted and that led to a really grueling urinary tract infection... whole system just kind of blacked out... i just went totally kaput i felt like i had the flu twenty four seven... i felt like i couldn\u0027t remember the name of... digestive issues... hot flashes and pre menopausal symptoms even though i was so young\"]), Code(slug=\u0027fear-and-uncertainty-after-diagnosis\u0027, name=\u0027Fear and uncertainty following chronic fatigue syndrome diagnosis\u0027, description=\u0027Upon receiving the chronic fatigue syndrome diagnosis, the participant experienced a mix of relief for having an explanation and devastating fear, likening the prognosis to a death or life sentence with no cure and ongoing suffering.\u0027, quotes=[\u0027you know i was so scared... i remember bawling... it was such a death sentence but in a way a life sentence that i was given that i would have to live with for years\u0027, \"on the one hand i was relieved to have a diagnosis... on the other hand it was really devastating... a natural path doctor said there\u0027s no cure\"]), Code(slug=\u0027resentment-towards-prescribed-diets\u0027, name=\u0027Resentment towards restrictive diets imposed in treatment\u0027, description=\u0027The participant describes feeling misery and resentment towards elimination diets (gluten-free, sugar-free, dairy-free) and restrictions imposed by medical and natural health practitioners that were not collaboratively chosen and felt imposed rather than empowering.\u0027, quotes=[\"it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating\", \"i felt like it was being done to me... actually he said you know what i think that\u0027s perpetuating the trauma\", \"there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing\"]), Code(slug=\u0027regaining-agency-in-healing\u0027, name=\u0027Regaining personal agency and control in healing journey\u0027, description=\u0027Participant highlights the importance of reclaiming personal power and actively collaborating in their healing process, as opposed to passively following medical instructions, which increased resentment and hindered healing progress.\u0027, quotes=[\u0027at some point i have to regain my agency and my power and my collaboration in my healing\u0027, \u0027i started realizing with diet and everything else... otherwise i was resenting it\u0027, \"someone sees me and i didn\u0027t even know that\u0027s how i felt\"]), Code(slug=\u0027mental-peace-despite-physical-symptoms\u0027, name=\u0027Experiencing mental peace while symptoms persist\u0027, description=\u0027Despite ongoing severe physical symptoms, participant describes achieving a mental state of peace and nonresistance through meditation and spiritual connection, observing symptoms without emotional struggle, which aided emotional coping and eventual recovery progress.\u0027, quotes=[\"there was this internal state of nonresistance or peace... and it really wasn\u0027t something i tried to do... it just kind of happened\", \u0027i was kind of watching the symptoms but felt peace\u0027, \u0027i really started meditating and practicing yoga and that sense of spiritual connection really helped\u0027]), Code(slug=\u0027brain-based-explanation-for-fatigue-symptoms\u0027, name=\u0027Adopting brain and nervous system explanation for ME/CFS symptoms\u0027, description=\"Learning that symptoms are perpetuated by brain and nervous system\u0027s stress response and not directly by viruses or physical damage gave participant hope and understanding, shifting from feeling helpless to empowered to calm the nervous system.\", quotes=[\u0027she explained all these viruses were suppressing the immune system... but it was how her brain and nervous system were processing stress\u0027, \"she said \u0027you\u0027re not sick, you\u0027re stressed, your system is stuck in this pattern\u0027\", \u0027the brain generates pain... fatigue because it senses danger... danger can be psychological as well as physical\u0027]), Code(slug=\u0027self-compassion-supporting-recovery\u0027, name=\u0027Cultivating self-compassion to manage symptoms and aid recovery\u0027, description=\u0027Participant emphasizes that adopting self-compassion and kindness toward oneself reduces self-criticism that otherwise triggers stress and perpetuates symptoms, enabling more effective emotional regulation and eventual physical improvement.\u0027, quotes=[\u0027self criticism actually does activate the danger alarm in the brain... so it can feed into symptoms\u0027, \"i just talk to myself in a compassionate way... i\u0027m so sorry... what do you want or need right now\", \u0027to realize having compassion on ourselves is helpful and can soften the blow\u0027]), Code(slug=\u0027impact-of-personality-on-symptom-perpetuation\u0027, name=\u0027Role of personality traits like perfectionism in illness experience\u0027, description=\u0027Perfectionism, people-pleasing, conscientiousness and holding in emotions were discussed as personality traits common in those with ME/CFS, contributing to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.\u0027, quotes=[\u0027perfectionist check, people pleasers check... really conscientious, hard driving\u0027, \"holding the emotions... it\u0027s kind of like a pressure cooker\", \u0027people who get cfs are really nice people but they hold in emotions\u0027]), Code(slug=\u0027importance-of-emotional-processing\u0027, name=\u0027Acknowledging and processing emotions as key to recovery\u0027, description=\u0027Participant shares therapeutic practices like journaling and psychotherapy that helped them express anger, grief, and trauma, releasing emotional pressure that contributed to nervous system hypervigilance and symptom worsening.\u0027, quotes=[\u0027some psychotherapy was helpful... talk through griefs\u0027, \u0027i did some journaling... just to get out frustration i was too nice to say to anyone\u0027, \u0027journaling your anger... bottled up anger can be very harmful\u0027]), Code(slug=\u0027validation-and-hope-from-connection\u0027, name=\u0027Finding validation and hope through empathetic connection\u0027, description=\u0027Talking with someone who truly understood the illness experience and explained the brain-based mechanism provided a critical moment of validation and hope, leading to a spontaneous increase in energy and belief in recovery.\u0027, quotes=[\u0027she cared a lot... spent three hours on the phone with me\u0027, \u0027i felt like i finally heard the truth... it gave me hope\u0027, \u0027after that conversation i got up and ran around the block like i had not ran in thirteen years\u0027])]\ncodes=[Code(slug=\u0027energy-loss-and-fatigue-in-cfs-long-covid\u0027, name=\u0027Energy loss and fatigue reducing daily activity\u0027, description=\u0027Participant experienced a noticeable drop in energy and motivation to engage in usual activities, leading to extended periods of rest and physical symptoms like canker sores, reflecting the debilitating impact of CFS/long COVID on daily life.\u0027, quotes=[\"...i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities...\", \u0027...laying in bed i would get these canker sores and just overall not feeling the best\u0027]), Code(slug=\u0027frustration-of-inconclusive-medical-tests\u0027, name=\u0027Frustration from inconclusive medical investigations\u0027, description=\u0027Participant felt frustration and uncertainty when medical tests showed normal results despite ongoing symptoms, leading to self-doubt about the origin of symptoms and exploration of mental health explanations.\u0027, quotes=[\u0027...i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work...\u0027, \u0027...thought maybe it was something mentally that was causing this\u0027]), Code(slug=\u0027initial-skepticism-of-brain-retraining-technique\u0027, name=\u0027Initial skepticism towards brain retraining techniques\u0027, description=\u0027Participant was initially doubtful about the efficacy of brain retraining and hypnosis-related methods but committed to the program and found these techniques effective for symptom management and anxiety reduction.\u0027, quotes=[\u0027...in the beginning i was a little skeptical because the program does have like a hypnosis type of effect...\u0027, \u0027...once i really committed to learning the program it really made a difference\u0027]), Code(slug=\u0027importance-of-mental-stamina-for-active-recovery\u0027, name=\u0027Importance of mental stamina for physical activity recovery\u0027, description=\u0027Participant emphasized the growth in mental stamina and positive mindset as critical to progressing from basic functioning to running a 10k and training for a marathon, showing the mental aspects integral to physical recovery.\u0027, quotes=[\"...before i don\u0027t think i would have had the mental stamina to do that...\", \u0027...now i just have that positive affirmations and changing the way of my mindset from fix to growth...\u0027]), Code(slug=\u0027valuing-supportive-encouragement-in-recovery\u0027, name=\u0027Valuing supportive and personal encouragement during recovery\u0027, description=\u0027Participant highlighted how personalized encouragement and belief from program coach Jason boosted motivation and aided recovery, illustrating the importance of personal connection in healing journeys.\u0027, quotes=[\"...he would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great...\", \"...it\u0027s just great having someone who believes in you that much...\"]), Code(slug=\u0027developing-empowering-self-statements\u0027, name=\u0027Developing empowering self-statements to combat anxiety\u0027, description=\u0027Participant learned to replace disempowering anxiety statements with growth-oriented affirmations, facilitating a more positive and hopeful mindset conducive to ongoing recovery and emotional resilience.\u0027, quotes=[\"...i didn\u0027t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better...\", \"...that\u0027s more of a journey rather than oh i\u0027m stuck at this state of anxiety...\"]), Code(slug=\u0027recognizing-the-journey-of-recovery-not-a-fix\u0027, name=\u0027Recognizing recovery as a journey, not a fixed state\u0027, description=\u0027Participant expressed understanding that recovery involves ongoing management rather than complete absence of symptoms, using tools to address fluctuations and maintain progress without fear.\u0027, quotes=[\"...i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools...\", \"...you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been...\"])]\ncodes=[Code(slug=\u0027long-covid-frustration-and-isolation\u0027, name=\u0027Feeling frustrated and isolated due to long COVID limitations\u0027, description=\u0027Participants express frustration with the ongoing symptoms and limitations imposed by long COVID, highlighting feelings of isolation and disconnection from their former healthy selves and social life. This includes struggles with physical and cognitive impairments and the emotional toll of not being understood.\u0027, quotes=[\u0027...I just feel so drained all the time, like I used to be so active and now I can barely manage a short walk...\u0027, \"...people don\u0027t see the struggle you go through every day, it makes you feel very alone...\", \u0027...it\u2019s frustrating because you want to get better but the symptoms just keep dragging you down...\u0027]), Code(slug=\u0027desire-for-understanding-and-validation\u0027, name=\u0027Desire for understanding and validation from others\u0027, description=\u0027Participants highlight a strong need for others to acknowledge and believe their experience with long COVID and ME/CFS, as they often face skepticism or misunderstanding. This recognition is crucial for emotional support and reducing the stigma they encounter.\u0027, quotes=[\u0027...sometimes it feels like people think it\u2019s all in your head...\u0027, \u0027...I just want doctors and my family to really understand what I\u2019m going through...\u0027, \u0027...validation would mean the world because it proves that I\u2019m not making this up...\u0027]), Code(slug=\u0027need-to-regain-physical-energy-and-function\u0027, name=\u0027Need to regain physical energy and return to normal function\u0027, description=\u0027A consistent desire to regain lost physical energy and resume activities that were previously routine is expressed. Participants describe longing to be able to do simple physical tasks, exercise, and engage in social and work activities without debilitating fatigue.\u0027, quotes=[\u0027...if I could just get some of my energy back, I\u2019d feel like myself again...\u0027, \u0027...I miss being able to just go for a jog or play with my kids without getting exhausted...\u0027, \u0027...the fatigue is so overwhelming that even making a meal feels like climbing a mountain...\u0027]), Code(slug=\u0027search-for-effective-treatment-and-cures\u0027, name=\u0027Search for effective treatment and cures for symptom relief\u0027, description=\u0027Participants discuss their ongoing search for treatments or interventions that can bring relief from symptoms or lead to recovery. This includes frustration at the lack of clear treatments and the trial and error of various therapies.\u0027, quotes=[\u0027...I\u2019ve tried so many treatments, but nothing seems to really work...\u0027, \u0027...it\u2019s heartbreaking to not find anything that helps the pain or fatigue...\u0027, \u0027...I keep hoping for a cure that will help me move on with my life...\u0027]), Code(slug=\u0027coping-with-identity-changes\u0027, name=\u0027Coping with changes to identity and sense of self\u0027, description=\u0027Participants reflect on the impact the illness has had on their identity and sense of self, expressing a mourning for their previous healthy self and struggling with the new limitations and changed roles in relationships and life.\u0027, quotes=[\u0027...I don\u2019t recognize the person I am now compared to before...\u0027, \u0027...it\u2019s hard to accept that I can\u2019t do what I used to do...\u0027, \u0027...sometimes I feel like I\u2019ve lost who I was...\u0027])]\ncodes=[Code(slug=\u0027anger-fight-flight-physiology-chronic-pain\u0027, name=\u0027Anger as fight or flight physiology driving chronic pain\u0027, description=\u0027Participants describe anger not as a psychological issue but as a physiological survival response generated by fight or flight sensations in the body. This intense physiological arousal leads to chronic pain and symptoms that are deeply wired in their nervous system, making them uncontrollable by conscious mind alone.\u0027, quotes=[\"the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight\", \u0027anger and anxiety are physiological survival responses that we have no control over zero\u0027, \u0027anger and anxiety are gifts i mean how you survive without anger and anxiety\u0027]), Code(slug=\u0027chronic-pain-neuroplasticity-memory-pain-circuits\u0027, name=\u0027Chronic pain as embedded memory in neuroplastic pain circuits\u0027, description=\"Chronic pain is explained as an embedded memory in the brain\u0027s pain circuits that cannot be erased. Participants feel their pain persists because the brain memorizes the pain experience permanently, similar to phantom limb pain. Fighting the pain reinforces these circuits, while acceptance and new living patterns enable transcendence and symptom reduction.\", quotes=[\u0027the pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone\u0027, \u0027the more you try to fight it and solve it the more you reinforce it\u0027, \"you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain\"]), Code(slug=\u0027role-of-unconscious-brain-in-survival-and-pain\u0027, name=\u0027Unconscious brain drives survival responses and chronic symptoms\u0027, description=\u0027Participants express how the unconscious brain processes millions of bits of information per second to keep them alive, without needing the conscious brain. Chronic symptoms arise from unconscious physiological threat states that the conscious brain struggles to control, explaining difficulty in managing chronic illness through conscious effort alone.\u0027, quotes=[\u0027the unconscious brain keeps you alive we do not need conscious brain to stay alive\u0027, \u0027the unconscious brain is eleven million bits of your patient per second the conscious brain is forty\u0027, \"you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes\"]), Code(slug=\u0027letting-go-fighting-pain-key-to-healing\u0027, name=\u0027Letting go of fighting pain as crucial to healing process\u0027, description=\u0027Participants describe a shift from actively trying to fix or fight their pain towards letting go and accepting it as key to healing. This change in relationship towards pain reduces reinforcement of pain circuits, enables separation from pain, and supports creating new, pain-free neural pathways through living life on their own terms.\u0027, quotes=[\"the hardest part of this project by far is people can\u0027t help but try to fix themselves\", \u0027you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain\u0027, \"the pain she or you\u0027re here as you start getting on with your life the way you want to your terms that\u0027s the solution\"]), Code(slug=\u0027threat-physiology-explains-chronic-symptoms\u0027, name=\u0027Threat physiology underlies chronic mental and physical symptoms\u0027, description=\u0027Participants reveal that chronic symptoms, including pain, anxiety, depression and other diseases, stem from sustained threat physiology involving hyperactive nervous system responses and inflammation. This state breaks down the body over time and maintains symptoms, emphasizing the need to calm the physiology rather than solely treat symptoms.\u0027, quotes=[\u0027every chronic disease with few exceptions are related to chronic stress\u0027, \u0027the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really\u0027, \u0027chronic fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress\u0027]), Code(slug=\u0027separation-from-negative-thoughts-in-pain\u0027, name=\u0027Separating oneself from negative and repetitive thoughts\u0027, description=\u0027Participants highlight the importance of separating their identity from negative intrusive thoughts and repetitive thought patterns that fuel anxiety and pain. Techniques like expressive writing, mindfulness and cognitive behavioral therapy help create this separation, reducing the physiological arousal that these thoughts cause.\u0027, quotes=[\"separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play\", \u0027if you work with that much so that separates you from the thoughts not solving them to say thought separation process\u0027, \u0027by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing\u0027]), Code(slug=\u0027nurturing-joy-for-chronic-pain-healing\u0027, name=\u0027Nurturing joy as a vital part of healing journey\u0027, description=\u0027Participants emphasize nurturing joy through positive experiences, relationships, and mindset as essential for healing chronic pain and symptoms. Joy helps build new neural pathways, counterbalances threat physiology, and supports a flourishing life beyond pain rather than solely focusing on fixing negative symptoms.\u0027, quotes=[\"the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible\", \"you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing\", \"you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs\"]), Code(slug=\u0027importance-of-sleep-diet-exercise-in-nervous-system-calm\u0027, name=\u0027Importance of sleep diet and exercise for calming nervous system\u0027, description=\u0027Participants discuss sleep, diet, and exercise as foundational pillars to calm the nervous system and support healing. Lack of sleep contributes directly to chronic pain development, and improving these areas helps regulate physiology, reduce inflammation, and promote regeneration, forming an essential part of recovery processes.\u0027, quotes=[\"if you address sleep is number one people weren\u0027t sleeping\", \u0027lack of sleep actually causes chronicle back pain not the way around\u0027, \u0027sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system\u0027]), Code(slug=\u0027role-of-physiology-over-conscious-control\u0027, name=\"Physiology\u0027s dominance over conscious brain in symptom experience\", description=\u0027Participants relate that physiological responses in the nervous system vastly overpower the conscious brain\u2019s ability to control thoughts or symptoms. Fight or flight states inhibit neocortex functions and cognitive thinking, resulting in automatic reactions and making conscious efforts insufficient to manage symptoms alone.\u0027, quotes=[\"it\u0027s about half a million times stronger than your conscious brain\", \"when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work\", \"by the time you think about it so let\u0027s have a thoughts for second\"]), Code(slug=\u0027skepticism-as-starting-point-for-healing-engagement\u0027, name=\u0027Using skepticism as a starting point to engage in healing\u0027, description=\u0027Participants express that skepticism is a natural and valid initial stance for people learning this approach. Encouraging embracing skepticism helps people start the healing journey by connecting with their own experience rather than blind belief, promoting curiosity and gradual learning to shift physiology and symptoms.\u0027, quotes=[\"i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said\", \"the key is connect to what\u0027s in there which is skepticism\", \u0027connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change\u0027])]\ncodes=[Code(slug=\u0027book-as-key-to-chronic-pain-recovery\u0027, name=\u0027Book as key to chronic pain recovery approach\u0027, description=\u0027The participant found a specific book by Dr. John Sarno pivotal in understanding and recovering from chronic pain and multiple other health issues. This self-help resource resonated deeply with their symptoms and personality, leading to significant healing and influencing their therapeutic career.\u0027, quotes=[\u0027i found a book by a guy named john sono... my back pain was gone within a few months ... a lot of other health problems i had suffered with for years went away\u0027, \u0027sorrow said that a lot of people could get better just by reading the book\u0027, \u0027the symptoms right the fact that i had always had something really since i was a kid ... it was really resonating\u0027, \u0027the personality characteristics... were so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions\u0027]), Code(slug=\u0027emotion-focused-therapy-for-pain\u0027, name=\u0027Emotion-focused therapy as core to pain recovery process\u0027, description=\"Emotion-focused therapy, particularly Intensive Short-Term Dynamic Psychotherapy (ISTDP), is central to the participant\u0027s approach to chronic pain recovery. It focuses on safely accessing and processing suppressed emotions, especially anger and rage, which manifest as physical pain.\", quotes=[\u0027the core of the intervention is this emotion focused approach... all emotions are healthy... we learn to disconnect from these emotions\u0027, \u0027we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain\u0027, \u0027brain pain research shows chronic pain lights up the amygdala which is responsible for emotions anger rage\u0027, \u0027ISTDP therapy allows patients to notice their bodily tension which is often anxiety about feeling anger or rage, helping them process these emotions\u0027]), Code(slug=\u0027barriers-to-therapy-engagement-and-trust\u0027, name=\u0027Barriers to engaging with emotion-focused therapy include fear and trust issues\u0027, description=\u0027The participant acknowledges that many patients struggle with engaging in ISTDP therapy due to fears, defenses, and trust issues. Therapy requires gradual emotional exposure at a tolerable pace to avoid setbacks, with some patients needing more time and support to lower their defenses and benefit.\u0027, quotes=[\"some folks can work through the process very quickly... but others it\u0027s more complicated and harder\", \u0027i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions\u0027, \u0027ISTDP is incredibly difficult but supportive... it requires building emotional threshold gradually\u0027, \u0027some people resist because dealing with emotions is hard work, their symptoms can flare up as they engage emotionally\u0027]), Code(slug=\u0027transformation-in-professional-acceptance\u0027, name=\u0027Growing acceptance of emotion-focused therapy among medical professionals\u0027, description=\"Over time, there has been significant progress in the medical and professional community\u0027s acceptance of emotion-focused therapy for chronic pain, with increased training and referrals. Despite previous stigma, doctors now recognize the scientific support and therapeutic benefits, leading to more integration in treatment.\", quotes=[\u0027most of the folks that i work with come to me because they know and understand and accept this\u0027, \"i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work\", \u0027medical schools are starting to have pain curriculum now and look towards scientifically supported approaches\u0027, \u0027doctors call me to see patients because there is a growing recognition of this approach\u0027]), Code(slug=\u0027mindset-shift-needed-for-therapy-acceptance\u0027, name=\u0027Mindset shift required for accepting therapy as part of recovery\u0027, description=\u0027Many patients initially see therapy only as coping rather than a true recovery pathway. The participant highlights the need for a paradigm shift from viewing mental health as separate to understanding physical and emotional health integration to accept emotion-focused therapy as a vital part of healing chronic pain.\u0027, quotes=[\u0027most of us think of our mental health and physical health as two separate things\u0027, \"addressing your mental health stuff is a nice to have when i was really sick i started going into therapy but it wasn\u0027t to make myself get better it was just to help me cope\", \u0027this is such a change in mindset and our understanding to see this as part of their path to getting better\u0027]), Code(slug=\u0027emotions-understood-as-physical-pain-source\u0027, name=\u0027Understanding emotions as the source of physical pain\u0027, description=\u0027The participant explains how emotions, especially those deemed unacceptable or dangerous, are converted into physical symptoms like chronic pain, supported by MRI studies. This understanding validates the psychological origins of pain and the need to address emotions therapeutically rather than focusing solely on structural damage.\u0027, quotes=[\u0027sometimes we develop strategies to ward off these uncomfortable or dangerous emotions and for chronic pain patients it tends to be physical pain\u0027, \u0027MRI research supports the process of emotions transforming into physical form\u0027, \u0027chronic pain patients brains light up the amygdala which is responsible for emotions like anger and rage\u0027, \"there\u0027s really no very little relationship between structural changes and the pain that you\u0027re experiencing\"])]\n\u003c/text\u003e\n\nFirst, make a short list of notes on the codes we want to keep. Avoid duplicates. Just list the names of the codes we will keep.\nAlways use the tools/JSON response.\n\n```json"
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"arguments": "{\"codes\":[{\"slug\":\"persistent-fatigue-energy\",\"name\":\"Persistent fatigue and energy drain on standing\",\"description\":\"Participant describes extreme exhaustion and complete energy drain when standing after lying down, causing prolonged bedbound state and lasting impact on daily functioning.\",\"quotes\":[\"\u0027...the minute i stood up i just couldn\u0027t do anything i just drained of energy completely\u0027\",\"\u0027...always tired constantly tired\u0027\"]},{\"slug\":\"overexertion-relapse-cycle\",\"name\":\"Overexertion leading to relapse and worsening symptoms\",\"description\":\"Participant explains the cycle of pushing beyond limits, subsequent virus contraction, and severe relapse, resulting in retirement and major activity limitations.\",\"quotes\":[\"\u0027...walking like ten miles every day ... i picked up a couple of viruses ... can\u0027t get out of bed\u0027\",\"\u0027...had to retire at that stage ... kept pushing myself\u0027\"]},{\"slug\":\"pushing-through-fatigue\",\"name\":\"Relentless pushing through fatigue despite physical limits\",\"description\":\"Despite exhaustion and inability to perform simple tasks, participant continually pushed themselves to walk and exercise daily, worsening energy depletion.\",\"quotes\":[\"\u0027i wouldn\u0027t let myself not go ... i\u0027d wake up at five o\u0027clock ... just went walking\u0027\",\"\u0027then i couldn\u0027t do anything for myself ... had to lie down because no energy to cook\u0027\"]},{\"slug\":\"acceptance-lifestyle-changes\",\"name\":\"Realization and acceptance of necessary lifestyle changes\",\"description\":\"Participant initially in denial later recognized the need for significant lifestyle changes to manage illness instead of hoping to return to previous activity levels.\",\"quotes\":[\"\u0027...i am going to have to make life changes ... my life is going to have to change\u0027\",\"\u0027part of it was just ignorance be part of it\u0027\"]},{\"slug\":\"brain-retraining-recovery\",\"name\":\"Embracing brain retraining as a key to recovery\",\"description\":\"Skepticism about brain retraining shifted to acceptance after learning it addresses protective responses and mental \u0027fight or flight\u0027 state, leading to program participation and positive results.\",\"quotes\":[\"\u0027...when he explaining ... your body has switched down some of the genes ... fight too much ... made sense\u0027\",\"\u0027...contacted jason and went onto his program because it actually really made sense\u0027\"]},{\"slug\":\"setting-boundaries-energy\",\"name\":\"Learning to set boundaries to manage energy and avoid overcommitment\",\"description\":\"Participant emphasizes importance of personal boundaries like letting calls go to voicemail to prevent energy drain and managing social demands by self-monitoring exhaustion.\",\"quotes\":[\"\u0027if my phone rings i let it go to voicemail so i can deal with it when i want to\u0027\",\"\u0027learning boundaries the hardest for me was learning boundaries\u0027\"]},{\"slug\":\"difficulty-relaxing-rest\",\"name\":\"Difficulty with relaxation and understanding true rest\",\"description\":\"Participant struggles with relaxation practices like meditation and needs to relearn the concept and practice of \u0027real rest\u0027 familiar to healthy individuals but hard for her to implement.\",\"quotes\":[\"\u0027...i\u0027m not good at relaxing ... people say do meditation ... i just struggled with it\u0027\",\"\u0027...now i make myself every day lay down and take a nap or do some meditation\u0027\"]},{\"slug\":\"anger-misunderstanding-others\",\"name\":\"Frustration and occasional anger toward others\u2019 misunderstanding of illness\",\"description\":\"Participant feels annoyance and flares when others minimize or misunderstand her illness or recovery, particularly those who never had the illness or pass unfair judgment, showing emotional toll of misunderstanding.\",\"quotes\":[\"\u0027when people say silly things sometimes ... i can flare up\u0027\",\"\u0027...when somebody minimizes it you can think no\u0027\"]},{\"slug\":\"hope-positivity-chronic-illness\",\"name\":\"Maintaining hope and positivity despite chronic illness challenges\",\"description\":\"Participant\u2019s positive and obstinate personality is key to refusing acceptance of permanent disability and sustaining belief in recovery and improvement despite long-term severe illness.\",\"quotes\":[\"\u0027...i\u0027m just a very positive person ... also obstinate\u0027\",\"\u0027never ever felt ... i was almost like in denial\u0027\"]},{\"slug\":\"self-awareness-overexertion\",\"name\":\"Developing self-awareness to avoid overexertion and manage symptoms\",\"description\":\"Participant stresses importance of listening to body, recognizing triggers, and adjusting activities timely to prevent relapse and maintain health improvements.\",\"quotes\":[\"\u0027...i\u0027ve learnt to listen to myself listen to my body ... work out what my triggers are\u0027\",\"\u0027i can stop myself before i actually get to the stage where i\u0027m really pushing boundaries\u0027\"]},{\"slug\":\"holistic-recovery-focus\",\"name\":\"Focusing on holistic recovery instead of individual symptoms\",\"description\":\"Participants emphasize prioritizing overall body support and holistic healing in managing ME/CFS rather than treating isolated symptoms, which was overwhelming and ineffective, whereas holistic approach contributed to gradual recovery.\",\"quotes\":[\"\u0027...recovery ended up being not about focusing on symptoms but on supporting my body as a whole...\u0027\",\"\u0027...as i slowly improved overall my symptoms slowly decreased...\u0027\"]},{\"slug\":\"symptom-comparison-limit\",\"name\":\"Desire for symptom comparison but finding it unhelpful\",\"description\":\"Participants want to compare symptoms for reassurance but find it unhelpful or misleading due to wide symptom variation among individuals, making direct comparison counterproductive.\",\"quotes\":[\"\u0027...people want to compare their symptoms against mine... to see if we\u0027re the same...\u0027\",\"\u0027...don\u0027t get too caught up on comparing symptoms...\u0027\"]},{\"slug\":\"symptom-management-palliation\",\"name\":\"Using symptom management mainly for comfort rather than recovery\",\"description\":\"Symptom management is described as largely palliative to ease discomfort, with treatments alleviating suffering temporarily but not addressing underlying illness, which needs broader healing strategies.\",\"quotes\":[\"\u0027...symptom management that i did was more palliative not about recovery...\u0027\",\"\u0027...if i had pain i might take painkillers or see doctor for sedatives...\u0027\"]},{\"slug\":\"personalized-recovery-plans\",\"name\":\"Need to tailor recovery plans individually to person\u0027s lifestyle and journey\",\"description\":\"Participants highlight importance of personalized recovery plans adapted to individual\u0027s unique symptoms, lifestyle and disease experience, as pacing and treatments vary between individuals.\",\"quotes\":[\"\u0027...somebody\u0027s recovery plan ... needs to be tailored...\u0027\", \"\u0027...pacing has to be tailored individually because their life is so different...\u0027\"]},{\"slug\":\"frustration-symptom-fix\",\"name\":\"Frustration and disappointment from focusing on symptom-specific fixes\",\"description\":\"Participants report desperation and disillusionment from searching for symptom fixes, spending extensive time and money on treatments without holistic healing, leading to emotional exhaustion and need for alternative strategies.\",\"quotes\":[\"\u0027...spent thousands of hours googling symptoms...\u0027, \u0027...almost poisoning myself by buying organic elderberries...\u0027\", \"\u0027...needed a more comprehensive strategy rather than symptom by symptom fixes...\u0027\"]},{\"slug\":\"emotional-boundaries-symptoms\",\"name\":\"Setting emotional boundaries around discussing past symptoms\",\"description\":\"Participants set limits on discussing past symptoms and one-on-one symptom troubleshooting to avoid trauma and overwhelm, preserving well-being while sharing recovery stories positively.\",\"quotes\":[\"\u0027...have boundaries ... not talking about old symptoms ...\u0027\", \"\u0027...writing my story took forever because it\u0027s traumatizing going back...\u0027\"]},{\"slug\":\"walking-miracle-gratitude\",\"name\":\"Walking miracle gratitude for life after chronic illness\",\"description\":\"Participant expresses deep appreciation for recovering to a life once only dreamed of, enjoying life with childlike wonder and daily gratitude despite occasional setbacks.\",\"quotes\":[\"\u0027...i have to catch myself and be like you are a walking miracle like this is incredible\u0027\",\"\u0027It\u0027s like being like when you watch a six year old wandering...\u0027\"]},{\"slug\":\"difficulty-relating-healthy\",\"name\":\"Difficulty relating to healthy friends post illness\",\"description\":\"Participant struggles maintaining friendships with healthy friends who complain or take health for granted, experiencing detachment and missing activities like working out.\",\"quotes\":[\"\u0027...friends who\u0027ve never been through it ... complain about their lives ... detachment\u0027\",\"\u0027...i really struggle with people who seem physically able but choose not to...\u0027\"]},{\"slug\":\"diagnosis-delay-misdiagnosis\",\"name\":\"Frustration with delayed diagnosis and misdiagnosis\",\"description\":\"Participant recounts initial fibromyalgia diagnosis ignoring fatigue, leading to delayed appropriate diagnosis and frustration with medical system\u0027s lack of understanding and care.\",\"quotes\":[\"\u0027...diagnosed with fibromyalgia ignoring fatigue... no treatment for many years...\u0027\",\"\u0027It took a while before chronic fatigue diagnosis...\u0027\"]},{\"slug\":\"self-advocacy-healthcare\",\"name\":\"Self advocacy and research to access better healthcare\",\"description\":\"Participant actively researched and managed health, connecting with knowledgeable providers who identified underlying infections, aiding diagnosis and treatment.\",\"quotes\":[\"\u0027...researching doctors as much as i could ... moved to get better care...\u0027\",\"\u0027...linked with doctors testing underlying infections...\u0027\"]},{\"slug\":\"genetic-mitochondrial-treatment\",\"name\":\"Discovery and treatment of genetic mitochondrial disease\",\"description\":\"Diagnosis of mitochondrial DNA depletion syndrome explained infections and fatigue; treatment focused on mitochondrial support helped regain strength and combat infections, marking recovery progress.\",\"quotes\":[\"\u0027...mitochondrial disease called mitochondrial dna depletion syndrome...\u0027\",\"\u0027...put on cocktail to boost mitochondria and fight infections...\u0027\"]},{\"slug\":\"drastic-lifestyle-changes\",\"name\":\"Drastic lifestyle changes including diet and environment for recovery\",\"description\":\"Significant lifestyle changes like elimination diet, gradual movement rehab, and removing toxins were key to healing, with dietary modifications reducing inflammation and aiding recovery.\",\"quotes\":[\"\u0027...dramatically change diet using food as medicine...\u0027\",\"\u0027...removed toxic ingredients and used water filtration...\u0027\"]},{\"slug\":\"overcoming-sugar-addiction\",\"name\":\"Overcoming intense sugar addiction to support healing\",\"description\":\"Participant overcame physical sugar addiction disrupting health and sleep through gut healing and probiotics, resulting in diminished cravings and healthier eating habits.\",\"quotes\":[\"\u0027Sugar was a massive one ... clearly had physical addiction...\u0027\", \"\u0027...up in middle of night every night and eat sugar\u0027\"]},{\"slug\":\"movement-therapy-gentle-rehab\",\"name\":\"Movement therapy as gentle rehabilitation rather than exercise\",\"description\":\"Participant emphasizes very gradual, gentle movement for rehabilitation rather than typical exercise, balancing activity with rest to avoid relapse.\",\"quotes\":[\"\u0027...gradually increase ability to move ... one to two minutes a day initially...\u0027\",\"\u0027...couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed...\u0027\"]},{\"slug\":\"psychological-growth-illness\",\"name\":\"Psychological impact and personal growth from chronic illness experience\",\"description\":\"Participant reflects on how illness changed identity, values, spirituality, fostering humility, acceptance, spiritual growth, gratitude and deeper appreciation for life and relationships.\",\"quotes\":[\"\u0027It humbled me ... changed me ... i wouldn\u0027t say i had spirituality before\u0027\",\"\u0027...illness catapults our growth and puts us in a better direction\u0027\"]},{\"slug\":\"pregnancy-anxiety-relapse\",\"name\":\"Fear and anxiety about pregnancy symptoms being illness relapse\",\"description\":\"Participant describes anxiety and uncertainty distinguishing pregnancy symptoms from illness relapse, learning self-compassion and cautious optimism about health journey.\",\"quotes\":[\"\u0027I keep reminding myself these are normal symptoms... fatigue or relapse?\u0027\",\"\u0027...normal to have headaches when pregnant, normal to feel tired...\u0027\"]},{\"slug\":\"hope-positivity-others-recover\",\"name\":\"Hope and positivity through seeing others recover from chronic illness\",\"description\":\"Participant gains essential hope and motivation by seeing recovery stories, highlighting importance of community and shared experience to sustain perseverance through chronic illness.\",\"quotes\":[\"\u0027...so nice to see many people getting past these things\u0027\",\"\u0027...people start reaching out to me, i recovered as well...\u0027\"]},{\"slug\":\"self-empowerment-knowledge-faith\",\"name\":\"Self empowerment through knowledge acquisition and faith in recovery\",\"description\":\"Participant credits self-education on illness combined with spiritual trust and faith as key to recovery, emphasizing trust in healing process and rejection of limiting prognoses.\",\"quotes\":[\"\u0027...had to go through years of research and learning\u0027\",\"\u0027It was like getting a bachelor\u2019s degree in chronic illness\u0027\"]},{\"slug\":\"scary-confusing-early-illness\",\"name\":\"Scary and confusing early illness experience\",\"description\":\"Participant describes onset of chronic fatigue as frightening and confusing, with overwhelming health decline requiring university leave and grieving process.\",\"quotes\":[\"\u0027...felt a bit fluy felt a bit strange felt a bit scared because it felt really weird\u0027\",\"\u0027...didn\u0027t know what was going on ... really scary time\u0027\"]},{\"slug\":\"feeling-isolated-illness\",\"name\":\"Feeling isolated due to illness\",\"description\":\"Participant felt lonely after returning home separated from university friends, relying primarily on family for support during tough times.\",\"quotes\":[\"\u0027...all my friends from home had gone to university ... didn\u0027t really have anyone other than family\u0027\",\"\u0027...it was a very tough time\u0027\"]},{\"slug\":\"reject-depression-diagnosis\",\"name\":\"Rejection of depression diagnosis and emotional awareness\",\"description\":\"Participant rejected doctor depression diagnosis, believing deeper physical illness despite emotional challenges and depression related to illness.\",\"quotes\":[\"\u0027one of the first doctors said she just thought i was depressed\u0027\",\"\u0027i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell\u0027\"]},{\"slug\":\"hope-meditation-yoga\",\"name\":\"Hope from meditation and yoga practices\",\"description\":\"Early meditation, yoga and breath work brought some relief and hope though benefits were sometimes temporary and inconsistent during long recovery.\",\"quotes\":[\"\u0027...perhaps meditation and yoga can help me heal\u0027\",\"\u0027...felt different after doing alternate nostril breathing\u0027\"]},{\"slug\":\"desperation-trying-therapies\",\"name\":\"Desperation leads to trying various alternative therapies\",\"description\":\"Participant tried multiple alternative therapies such as acupuncture, reiki, nutrition, colon hydrotherapy out of desperation, with limited or mixed success.\",\"quotes\":[\"\u0027...went for reiki and this and that\u0027\",\"\u0027...flew to america to work with healer\u0027\"]},{\"slug\":\"suppressed-anger-trauma\",\"name\":\"Realization of suppressed anger and unresolved trauma\",\"description\":\"Participant recognized suppressed anger and trauma affecting recovery, identifying emotional blocks and unresolved feelings contributing to physical symptoms.\",\"quotes\":[\"\u0027...had suppressed anger and unresolved trauma in my system\u0027\",\"\u0027...avoiding conflict at all costs\u0027\"]},{\"slug\":\"mindbody-trauma-understanding\",\"name\":\"Mind-body connection and trauma understanding\",\"description\":\"Participant found healing by exploring mind-body link, viewing symptoms as trauma manifestations such as freeze response, and identifying emotional triggers.\",\"quotes\":[\"\u0027...looking at symptoms ... emotion underlying this symptom\u0027\",\"\u0027...impact of trauma on my system manifesting physically like a freeze response\u0027\"]},{\"slug\":\"authentic-self-expression\",\"name\":\"Learning authentic self-expression and setting boundaries\",\"description\":\"Recovery involved learning to express authentic emotions and needs without fear, employing communication skills to balance self-care and relationships.\",\"quotes\":[\"\u0027learning to be more myself more authentic\u0027\",\"\u0027learning non violent communication...\u0027\"]},{\"slug\":\"spiritual-experience-healing\",\"name\":\"Spiritual experience as part of healing journey\",\"description\":\"Spiritual awakening, meditation, and mystical experiences were deep and sometimes destabilizing parts of recovery, requiring balance of spiritual insight and daily functioning.\",\"quotes\":[\"\u0027...spiritual awakening\u0027\",\"\u0027...felt like connecting with the whole universe\u0027\"]},{\"slug\":\"ongoing-self-care-post-recovery\",\"name\":\"Ongoing self-care and regulation post recovery\",\"description\":\"Participant manages emotional and trauma symptoms post-recovery with self-regulation strategies including nature exposure and therapeutic work to maintain well-being.\",\"quotes\":[\"\u0027...periodically trauma type symptoms\u0027\",\"\u0027...go do work with a practitioner or spend night time in nature\u0027\"]},{\"slug\":\"career-shift-healing\",\"name\":\"Career shift driven by healing experience\",\"description\":\"Healing journey influenced career towards coaching and therapeutic work, integrating personal recovery insights professionally while continuing learning and practices.\",\"quotes\":[\"\u0027...lots of therapeutic and coaching trainings\u0027\",\"\u0027...nearly twenty years working in this field\u0027\"]},{\"slug\":\"familial-ancestral-trauma\",\"name\":\"Recognizing familial and ancestral trauma impact on health\",\"description\":\"Participant recognizes ancestral and family trauma influencing illness patterns and wider systemic generational factors contributing to chronic fatigue symptoms.\",\"quotes\":[\"\u0027...a lot of my trauma wasn\u0027t personal but was ancestral ... from family line\u0027\",\"\u0027...illness in one person might be a wider family system issue\u0027\"]},{\"slug\":\"trauma-sudden-crisis\",\"name\":\"Trauma leading to sudden health crisis and exhaustion\",\"description\":\"Sexual assault and subsequent infection triggered severe exhaustion and ME/CFS symptoms like insomnia, brain fog and digestive issues lasting years.\",\"quotes\":[\"\u0027...sexually assaulted and that led to urinary tract infection ... system blacked out ... flu twenty four seven\u0027\",\"\u0027...digestive issues ... hot flashes even though young\u0027\"]},{\"slug\":\"fear-uncertainty-diagnosis\",\"name\":\"Fear and uncertainty following chronic fatigue syndrome diagnosis\",\"description\":\"Diagnosis brought relief and devastating fear likened to death or life sentence with no cure, causing significant emotional distress.\",\"quotes\":[\"\u0027...so scared ... it was such a death sentence but also a life sentence\u0027\",\"\u0027...relieved to have diagnosis ... no cure\u0027\"]},{\"slug\":\"resentment-diets-treatment\",\"name\":\"Resentment towards restrictive diets imposed in treatment\",\"description\":\"Participant resented elimination diets imposed without collaboration, feeling miserable and disempowered rather than active in the healing process.\",\"quotes\":[\"\u0027...totally miserable ... taking away anything you enjoy eating\u0027\",\"\u0027...felt it was being done to me ... perpetuating trauma\u0027\"]},{\"slug\":\"regaining-agency-healing\",\"name\":\"Regaining personal agency and control in healing journey\",\"description\":\"Participant emphasizes reclaiming power and collaborating actively in healing process to avoid resentment and improve progress.\",\"quotes\":[\"\u0027...have to regain my agency and collaboration in healing\u0027\",\"\u0027...started realizing with diet ... otherwise i was resenting it\u0027\"]},{\"slug\":\"mental-peace-symptoms\",\"name\":\"Experiencing mental peace while symptoms persist\",\"description\":\"Despite severe symptoms, participant achieved mental peace and nonresistance through meditation and spiritual connection, aiding emotional adaptation and recovery progress.\",\"quotes\":[\"\u0027...internal state of nonresistance or peace ... it just kind of happened\u0027\",\"\u0027...watching symptoms but felt peace\u0027\"]},{\"slug\":\"brain-nervous-sys-fatigue\",\"name\":\"Adopting brain and nervous system explanation for ME/CFS symptoms\",\"description\":\"Learning symptoms result from brain and nervous system stress response shifted participant from helplessness to empowerment to calm nervous system and improve symptoms.\",\"quotes\":[\"\u0027...brain and nervous system processing stress ... not sick but stressed\u0027\",\"\u0027...brain generates pain fatigue because it senses danger\u0027\"]},{\"slug\":\"self-compassion-recovery\",\"name\":\"Cultivating self-compassion to manage symptoms and aid recovery\",\"description\":\"Self-compassion reduces self-criticism that triggers stress and perpetuates symptoms, enabling emotional regulation and physical improvement.\",\"quotes\":[\"\u0027...self criticism activates danger alarm in brain ... feeds symptoms\u0027\",\"\u0027...talk to myself in a compassionate way ... what do you want right now\u0027\"]},{\"slug\":\"personality-traits-illness\",\"name\":\"Role of personality traits like perfectionism in illness experience\",\"description\":\"Traits like perfectionism, people-pleasing, conscientiousness and emotional suppression contribute to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.\",\"quotes\":[\"\u0027perfectionist check, people pleasers check ... really conscientious\u0027\",\"\u0027holding the emotions ... like a pressure cooker\u0027\"]},{\"slug\":\"emotional-processing-key\",\"name\":\"Acknowledging and processing emotions as key to recovery\",\"description\":\"Therapeutic practices like journaling and psychotherapy help express anger, grief and trauma, releasing emotional pressure contributing to nervous system hypervigilance and symptom worsening.\",\"quotes\":[\"\u0027...some psychotherapy was helpful ... talk through griefs\u0027\",\"\u0027...journaling your anger ... bottled up anger can be very harmful\u0027\"]},{\"slug\":\"validation-hope-connection\",\"name\":\"Finding validation and hope through empathetic connection\",\"description\":\"Talking with someone who understood illness and brain-based mechanisms offered crucial validation and hope, triggering energy and belief in recovery.\",\"quotes\":[\"\u0027...spent three hours on phone ... finally heard the truth ... gave me hope\u0027\",\"\u0027...got up and ran around the block like never before\u0027\"]},{\"slug\":\"energy-loss-fatigue\",\"name\":\"Energy loss and fatigue reducing daily activity\",\"description\":\"Participant experienced drop in energy and motivation, leading to extended rest periods and physical symptoms reflecting debilitating impact of CFS/long COVID.\",\"quotes\":[\"\u0027...started to get really tired ... no motivation to do activities...\u0027\",\"\u0027...laying in bed would get canker sores ... not feeling the best\u0027\"]},{\"slug\":\"frustration-medical-tests\",\"name\":\"Frustration from inconclusive medical investigations\",\"description\":\"Participant felt uncertain and doubtful when tests showed normal despite symptoms, leading to exploration of mental health explanations and self-doubt.\",\"quotes\":[\"\u0027...multiple doctors said everything was perfectly fine ...\u0027\",\"\u0027...thought maybe something mentally causing this\u0027\"]},{\"slug\":\"skepticism-brain-retraining\",\"name\":\"Initial skepticism towards brain retraining techniques\",\"description\":\"Participant doubted brain retraining programs at first, but upon commitment found them effective for symptom management and anxiety reduction.\",\"quotes\":[\"\u0027...program has hypnosis type of effect ... initially skeptical\u0027\",\"\u0027...committed and made a difference\u0027\"]},{\"slug\":\"mental-stamina-recovery\",\"name\":\"Importance of mental stamina for physical activity recovery\",\"description\":\"Mental stamina and positive mindset were crucial for progressing from basic function to running a 10k and training for a marathon, highlighting mental role in physical recovery.\",\"quotes\":[\"\u0027...didn\u0027t have mental stamina to do that before...\u0027\",\"\u0027...positive affirmations and growth mindset...\u0027\"]},{\"slug\":\"supportive-encouragement\",\"name\":\"Valuing supportive and personal encouragement during recovery\",\"description\":\"Encouragement and belief from recovery coach Jason boosted motivation and aided healing, illustrating importance of personal connection in recovery journey.\",\"quotes\":[\"\u0027...text messages saying i climbed mountain ... i know you can do it\u0027\",\"\u0027...great having someone who believes in you that much...\u0027\"]},{\"slug\":\"empowering-self-statements\",\"name\":\"Developing empowering self-statements to combat anxiety\",\"description\":\"Participant learned to replace disempowering anxiety statements with growth-oriented affirmations fostering positive and hopeful mindset for emotional resilience.\",\"quotes\":[\"\u0027...saying i am anxious is disempowering ... say i am on my way to getting better\u0027\",\"\u0027...it\u0027s a journey rather than a stuck state...\u0027\"]},{\"slug\":\"recovery-is-journey\",\"name\":\"Recognizing recovery as a journey, not a fixed state\",\"description\":\"Recovery involves ongoing management and coping rather than symptom absence, using tools to handle fluctuations and maintain progress without fear.\",\"quotes\":[\"\u0027...have tools to fix that ... life is stressful ... i can refocus\u0027\",\"\u0027...journey ... can\u0027t keep comparing yourself...\u0027\"]},{\"slug\":\"long-covid-frustration-isolation\",\"name\":\"Feeling frustrated and isolated due to long COVID limitations\",\"description\":\"Participants express frustration with ongoing symptoms and limitations from long COVID, feeling isolated and disconnected from prior healthy life and social connections.\",\"quotes\":[\"\u0027...feel drained all the time ... used to be active now barely manage walk...\u0027\",\"\u0027...people don\u2019t see struggle you go through ... makes you feel alone...\u0027\"]},{\"slug\":\"desire-understanding-validation\",\"name\":\"Desire for understanding and validation from others\",\"description\":\"Participants strongly desire acknowledgement and belief in their long COVID and ME/CFS experience to reduce stigma and obtain emotional support.\",\"quotes\":[\"\u0027...sometimes it feels like people think it\u2019s in your head...\u0027\",\"\u0027...validation would mean the world ... proves not making this up...\u0027\"]},{\"slug\":\"regain-physical-energy\",\"name\":\"Need to regain physical energy and return to normal function\",\"description\":\"Participants express longing to regain physical energy and resume routine activities without debilitating fatigue, describing simple tasks as exhausting.\",\"quotes\":[\"\u0027...if i could get some energy back ... feel like myself\u0027\",\"\u0027...fatigue so overwhelming even making meal feels like climbing mountain...\u0027\"]},{\"slug\":\"search-effective-treatment\",\"name\":\"Search for effective treatment and cures for symptom relief\",\"description\":\"Participants discuss ongoing search for treatments that relieve symptoms or bring recovery, facing frustration with lack of clear options and trial and error approaches.\",\"quotes\":[\"\u0027...tried so many treatments but nothing works...\u0027\",\"\u0027...keep hoping for a cure to move on with life...\u0027\"]},{\"slug\":\"coping-identity-changes\",\"name\":\"Coping with changes to identity and sense of self\",\"description\":\"Participants mourn their previous healthy self and struggle with new limitations and changed roles, affecting identity and self-concept.\",\"quotes\":[\"\u0027...don\u2019t recognize person i am now compared to before...\u0027\",\"\u0027...hard to accept not doing what used to do...\u0027\"]},{\"slug\":\"anger-fight-flight\",\"name\":\"Anger as fight or flight physiology driving chronic pain\",\"description\":\"Anger is a survival physiological response generated by fight or flight sensations causing chronic pain deeply wired in nervous system, uncontrollable by conscious mind.\",\"quotes\":[\"\u0027...biggest factor keeping people in pain is anger ... fight or flight sensation\u0027\",\"\u0027anger and anxiety are physiological survival responses ... no control\u0027\"]},{\"slug\":\"pain-memory-neuroplasticity\",\"name\":\"Chronic pain as embedded memory in neuroplastic pain circuits\",\"description\":\"Chronic pain seen as permanent brain memory in pain circuits that cannot be erased; fighting pain reinforces it; acceptance allows separation and symptom reduction.\",\"quotes\":[\"\u0027...pain circuits absolutely permanent like phantom limb pain\u0027\",\"\u0027...fighting pain reinforces it; you learn to separate yourself from pain\u0027\"]},{\"slug\":\"unconscious-brain-survival\",\"name\":\"Unconscious brain drives survival responses and chronic symptoms\",\"description\":\"Unconscious brain processes vast information to keep alive, chronic symptoms arise from physiological threat states beyond conscious control, explaining difficulty managing illness consciously.\",\"quotes\":[\"\u0027...unconscious brain keeps you alive ... conscious brain only small part\u0027\",\"\u0027...can\u0027t control it like dragging with handbrakes\u0027\"]},{\"slug\":\"letting-go-fighting-pain\",\"name\":\"Letting go of fighting pain as crucial to healing process\",\"description\":\"Healing requires shifting from fighting pain to letting go and acceptance, reducing reinforcement of pain circuits and creating new neural pathways supporting life on own terms.\",\"quotes\":[\"\u0027...hardest part is people can\u0027t help but try to fix themselves\u0027\",\"\u0027...learn to separate yourself from pain and get on with life\u0027\"]},{\"slug\":\"threat-physiology-chronic-symptoms\",\"name\":\"Threat physiology underlies chronic mental and physical symptoms\",\"description\":\"Chronic symptoms including pain, anxiety and depression stem from sustained threat physiology causing nervous system hyperactivity and inflammation, requiring calming physiology rather than only treating symptoms.\",\"quotes\":[\"\u0027...every chronic disease related to chronic stress\u0027\",\"\u0027...anxiety depression bipolar ocd schizophrenia are metabolic inflammatory disorders\u0027\"]},{\"slug\":\"separating-negative-thoughts\",\"name\":\"Separating oneself from negative and repetitive thoughts\",\"description\":\"Separating identity from negative intrusive thoughts using therapies reduces physiological arousal caused by thoughts that fuel anxiety and pain.\",\"quotes\":[\"\u0027...separate from the thoughts that\u0027s where behavior therapy comes into play\u0027\",\"\u0027...direct relationship between thoughts and suicide attempts\u0027\"]},{\"slug\":\"nurturing-joy-healing\",\"name\":\"Nurturing joy as a vital part of healing journey\",\"description\":\"Joy through positive experiences and relationships supports healing by building new neural pathways, countering threat physiology and enabling flourishing beyond pain.\",\"quotes\":[\"\u0027...nurture joy if you\u2019re fighting stress not possible\u0027\",\"\u0027...good food good wine good friends promote healing\u0027\"]},{\"slug\":\"sleep-diet-exercise-nervous-system\",\"name\":\"Importance of sleep diet and exercise for calming nervous system\",\"description\":\"Sleep, diet and exercise foundational for calming nervous system, regulating physiology, reducing inflammation and supporting healing and regeneration.\",\"quotes\":[\"\u0027...address sleep is number one...\u0027\", \"\u0027...lack of sleep causes chronic back pain not the way around\u0027\"]},{\"slug\":\"physiology-over-consciousness\",\"name\":\"Physiology\u0027s dominance over conscious brain in symptom experience\",\"description\":\"Physiological nervous system responses overpower conscious brain\u2019s control of symptoms; fight or flight inhibits cognitive function, making conscious efforts insufficient alone.\",\"quotes\":[\"\u0027...half a million times stronger than conscious brain\u0027\",\"\u0027...highest thinking brain neocortex doesn\u2019t work in fight or flight\u0027\"]},{\"slug\":\"skepticism-starting-point-healing\",\"name\":\"Using skepticism as a starting point to engage in healing\",\"description\":\"Skepticism is a valid initial stance for learning new healing approaches, encouraging connection to experience and curiosity rather than blind belief to gradually shift physiology and symptoms.\",\"quotes\":[\"\u0027...don\u0027t believe me ... connect to skepticism ... starting point\u0027\",\"\u0027...start doing the work now letting your brain change\u0027\"]},{\"slug\":\"book-key-pain-recovery\",\"name\":\"Book as key to chronic pain recovery approach\",\"description\":\"A specific book was pivotal for understanding and recovery from chronic pain, resonating with symptoms and personality, influencing therapeutic career choice.\",\"quotes\":[\"\u0027...book by john sono ... back pain gone ... health problems went away\u0027\",\"\u0027...personality characteristics true for me and most clients\u0027\"]},{\"slug\":\"emotion-focused-pain-therapy\",\"name\":\"Emotion-focused therapy as core to pain recovery process\",\"description\":\"Intensive Short-Term Dynamic Psychotherapy (ISTDP) is central for chronic pain recovery, focusing on accessing and processing suppressed emotions like anger and rage causing physical pain.\",\"quotes\":[\"\u0027...core intervention is emotion focused approach ... all emotions healthy\u0027\",\"\u0027...therapy helps notice bodily tension often anxiety about anger or rage\u0027\"]},{\"slug\":\"therapy-engagement-barriers\",\"name\":\"Barriers to engaging with emotion-focused therapy include fear and trust issues\",\"description\":\"Patients face fears and defenses that hinder engagement with emotion-focused therapy; require gradual emotional exposure and support to lower defenses and benefit from treatment.\",\"quotes\":[\"\u0027...some folks work quickly others more complicated with challenges\u0027\",\"\u0027...ISTDP difficult but supportive ... gradual emotional threshold building\u0027\"]},{\"slug\":\"professional-acceptance-therapy\",\"name\":\"Growing acceptance of emotion-focused therapy among medical professionals\",\"description\":\"Medical community increasingly recognizes and integrates emotion-focused therapy for chronic pain, with training, referrals, and scientific support increasing over time.\",\"quotes\":[\"\u0027...most folks come because they accept this approach\u0027\",\"\u0027...training doctors in local hospital ... growing recognition\u0027\"]},{\"slug\":\"mindset-shift-therapy-acceptance\",\"name\":\"Mindset shift required for accepting therapy as part of recovery\",\"description\":\"Acceptance of therapy requires paradigm shift from seeing mental health as separate to integrating physical and emotional health, moving from coping to true recovery path.\",\"quotes\":[\"\u0027...mental health and physical health often thought separate\u0027\",\"\u0027...therapy seen as coping not to get better initially\u0027\"]},{\"slug\":\"emotions-source-physical-pain\",\"name\":\"Understanding emotions as the source of physical pain\",\"description\":\"Emotions, especially unacceptable or dangerous ones, are converted into physical symptoms such as chronic pain; MRI research supports this process, validating psychological origins and need for emotional therapy.\",\"quotes\":[\"\u0027...strategies to ward off dangerous emotions turned into physical pain\u0027\",\"\u0027...chronic pain brains light up amygdala responsible for anger and rage\u0027\"]}]}",
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{
"description": "Participant describes extreme exhaustion and complete energy drain when standing after lying down, causing prolonged bedbound state and lasting impact on daily functioning.",
"name": "Persistent fatigue and energy drain on standing",
"quotes": [
"\u0027...the minute i stood up i just couldn\u0027t do anything i just drained of energy completely\u0027",
"\u0027...always tired constantly tired\u0027"
],
"slug": "persistent-fatigue-energy"
},
{
"description": "Participant explains the cycle of pushing beyond limits, subsequent virus contraction, and severe relapse, resulting in retirement and major activity limitations.",
"name": "Overexertion leading to relapse and worsening symptoms",
"quotes": [
"\u0027...walking like ten miles every day ... i picked up a couple of viruses ... can\u0027t get out of bed\u0027",
"\u0027...had to retire at that stage ... kept pushing myself\u0027"
],
"slug": "overexertion-relapse-cycle"
},
{
"description": "Despite exhaustion and inability to perform simple tasks, participant continually pushed themselves to walk and exercise daily, worsening energy depletion.",
"name": "Relentless pushing through fatigue despite physical limits",
"quotes": [
"\u0027i wouldn\u0027t let myself not go ... i\u0027d wake up at five o\u0027clock ... just went walking\u0027",
"\u0027then i couldn\u0027t do anything for myself ... had to lie down because no energy to cook\u0027"
],
"slug": "pushing-through-fatigue"
},
{
"description": "Participant initially in denial later recognized the need for significant lifestyle changes to manage illness instead of hoping to return to previous activity levels.",
"name": "Realization and acceptance of necessary lifestyle changes",
"quotes": [
"\u0027...i am going to have to make life changes ... my life is going to have to change\u0027",
"\u0027part of it was just ignorance be part of it\u0027"
],
"slug": "acceptance-lifestyle-changes"
},
{
"description": "Skepticism about brain retraining shifted to acceptance after learning it addresses protective responses and mental \u0027fight or flight\u0027 state, leading to program participation and positive results.",
"name": "Embracing brain retraining as a key to recovery",
"quotes": [
"\u0027...when he explaining ... your body has switched down some of the genes ... fight too much ... made sense\u0027",
"\u0027...contacted jason and went onto his program because it actually really made sense\u0027"
],
"slug": "brain-retraining-recovery"
},
{
"description": "Participant emphasizes importance of personal boundaries like letting calls go to voicemail to prevent energy drain and managing social demands by self-monitoring exhaustion.",
"name": "Learning to set boundaries to manage energy and avoid overcommitment",
"quotes": [
"\u0027if my phone rings i let it go to voicemail so i can deal with it when i want to\u0027",
"\u0027learning boundaries the hardest for me was learning boundaries\u0027"
],
"slug": "setting-boundaries-energy"
},
{
"description": "Participant struggles with relaxation practices like meditation and needs to relearn the concept and practice of \u0027real rest\u0027 familiar to healthy individuals but hard for her to implement.",
"name": "Difficulty with relaxation and understanding true rest",
"quotes": [
"\u0027...i\u0027m not good at relaxing ... people say do meditation ... i just struggled with it\u0027",
"\u0027...now i make myself every day lay down and take a nap or do some meditation\u0027"
],
"slug": "difficulty-relaxing-rest"
},
{
"description": "Participant feels annoyance and flares when others minimize or misunderstand her illness or recovery, particularly those who never had the illness or pass unfair judgment, showing emotional toll of misunderstanding.",
"name": "Frustration and occasional anger toward others\u2019 misunderstanding of illness",
"quotes": [
"\u0027when people say silly things sometimes ... i can flare up\u0027",
"\u0027...when somebody minimizes it you can think no\u0027"
],
"slug": "anger-misunderstanding-others"
},
{
"description": "Participant\u2019s positive and obstinate personality is key to refusing acceptance of permanent disability and sustaining belief in recovery and improvement despite long-term severe illness.",
"name": "Maintaining hope and positivity despite chronic illness challenges",
"quotes": [
"\u0027...i\u0027m just a very positive person ... also obstinate\u0027",
"\u0027never ever felt ... i was almost like in denial\u0027"
],
"slug": "hope-positivity-chronic-illness"
},
{
"description": "Participant stresses importance of listening to body, recognizing triggers, and adjusting activities timely to prevent relapse and maintain health improvements.",
"name": "Developing self-awareness to avoid overexertion and manage symptoms",
"quotes": [
"\u0027...i\u0027ve learnt to listen to myself listen to my body ... work out what my triggers are\u0027",
"\u0027i can stop myself before i actually get to the stage where i\u0027m really pushing boundaries\u0027"
],
"slug": "self-awareness-overexertion"
},
{
"description": "Participants emphasize prioritizing overall body support and holistic healing in managing ME/CFS rather than treating isolated symptoms, which was overwhelming and ineffective, whereas holistic approach contributed to gradual recovery.",
"name": "Focusing on holistic recovery instead of individual symptoms",
"quotes": [
"\u0027...recovery ended up being not about focusing on symptoms but on supporting my body as a whole...\u0027",
"\u0027...as i slowly improved overall my symptoms slowly decreased...\u0027"
],
"slug": "holistic-recovery-focus"
},
{
"description": "Participants want to compare symptoms for reassurance but find it unhelpful or misleading due to wide symptom variation among individuals, making direct comparison counterproductive.",
"name": "Desire for symptom comparison but finding it unhelpful",
"quotes": [
"\u0027...people want to compare their symptoms against mine... to see if we\u0027re the same...\u0027",
"\u0027...don\u0027t get too caught up on comparing symptoms...\u0027"
],
"slug": "symptom-comparison-limit"
},
{
"description": "Symptom management is described as largely palliative to ease discomfort, with treatments alleviating suffering temporarily but not addressing underlying illness, which needs broader healing strategies.",
"name": "Using symptom management mainly for comfort rather than recovery",
"quotes": [
"\u0027...symptom management that i did was more palliative not about recovery...\u0027",
"\u0027...if i had pain i might take painkillers or see doctor for sedatives...\u0027"
],
"slug": "symptom-management-palliation"
},
{
"description": "Participants highlight importance of personalized recovery plans adapted to individual\u0027s unique symptoms, lifestyle and disease experience, as pacing and treatments vary between individuals.",
"name": "Need to tailor recovery plans individually to person\u0027s lifestyle and journey",
"quotes": [
"\u0027...somebody\u0027s recovery plan ... needs to be tailored...\u0027",
"\u0027...pacing has to be tailored individually because their life is so different...\u0027"
],
"slug": "personalized-recovery-plans"
},
{
"description": "Participants report desperation and disillusionment from searching for symptom fixes, spending extensive time and money on treatments without holistic healing, leading to emotional exhaustion and need for alternative strategies.",
"name": "Frustration and disappointment from focusing on symptom-specific fixes",
"quotes": [
"\u0027...spent thousands of hours googling symptoms...\u0027, \u0027...almost poisoning myself by buying organic elderberries...\u0027",
"\u0027...needed a more comprehensive strategy rather than symptom by symptom fixes...\u0027"
],
"slug": "frustration-symptom-fix"
},
{
"description": "Participants set limits on discussing past symptoms and one-on-one symptom troubleshooting to avoid trauma and overwhelm, preserving well-being while sharing recovery stories positively.",
"name": "Setting emotional boundaries around discussing past symptoms",
"quotes": [
"\u0027...have boundaries ... not talking about old symptoms ...\u0027",
"\u0027...writing my story took forever because it\u0027s traumatizing going back...\u0027"
],
"slug": "emotional-boundaries-symptoms"
},
{
"description": "Participant expresses deep appreciation for recovering to a life once only dreamed of, enjoying life with childlike wonder and daily gratitude despite occasional setbacks.",
"name": "Walking miracle gratitude for life after chronic illness",
"quotes": [
"\u0027...i have to catch myself and be like you are a walking miracle like this is incredible\u0027",
"\u0027It\u0027s like being like when you watch a six year old wandering...\u0027"
],
"slug": "walking-miracle-gratitude"
},
{
"description": "Participant struggles maintaining friendships with healthy friends who complain or take health for granted, experiencing detachment and missing activities like working out.",
"name": "Difficulty relating to healthy friends post illness",
"quotes": [
"\u0027...friends who\u0027ve never been through it ... complain about their lives ... detachment\u0027",
"\u0027...i really struggle with people who seem physically able but choose not to...\u0027"
],
"slug": "difficulty-relating-healthy"
},
{
"description": "Participant recounts initial fibromyalgia diagnosis ignoring fatigue, leading to delayed appropriate diagnosis and frustration with medical system\u0027s lack of understanding and care.",
"name": "Frustration with delayed diagnosis and misdiagnosis",
"quotes": [
"\u0027...diagnosed with fibromyalgia ignoring fatigue... no treatment for many years...\u0027",
"\u0027It took a while before chronic fatigue diagnosis...\u0027"
],
"slug": "diagnosis-delay-misdiagnosis"
},
{
"description": "Participant actively researched and managed health, connecting with knowledgeable providers who identified underlying infections, aiding diagnosis and treatment.",
"name": "Self advocacy and research to access better healthcare",
"quotes": [
"\u0027...researching doctors as much as i could ... moved to get better care...\u0027",
"\u0027...linked with doctors testing underlying infections...\u0027"
],
"slug": "self-advocacy-healthcare"
},
{
"description": "Diagnosis of mitochondrial DNA depletion syndrome explained infections and fatigue; treatment focused on mitochondrial support helped regain strength and combat infections, marking recovery progress.",
"name": "Discovery and treatment of genetic mitochondrial disease",
"quotes": [
"\u0027...mitochondrial disease called mitochondrial dna depletion syndrome...\u0027",
"\u0027...put on cocktail to boost mitochondria and fight infections...\u0027"
],
"slug": "genetic-mitochondrial-treatment"
},
{
"description": "Significant lifestyle changes like elimination diet, gradual movement rehab, and removing toxins were key to healing, with dietary modifications reducing inflammation and aiding recovery.",
"name": "Drastic lifestyle changes including diet and environment for recovery",
"quotes": [
"\u0027...dramatically change diet using food as medicine...\u0027",
"\u0027...removed toxic ingredients and used water filtration...\u0027"
],
"slug": "drastic-lifestyle-changes"
},
{
"description": "Participant overcame physical sugar addiction disrupting health and sleep through gut healing and probiotics, resulting in diminished cravings and healthier eating habits.",
"name": "Overcoming intense sugar addiction to support healing",
"quotes": [
"\u0027Sugar was a massive one ... clearly had physical addiction...\u0027",
"\u0027...up in middle of night every night and eat sugar\u0027"
],
"slug": "overcoming-sugar-addiction"
},
{
"description": "Participant emphasizes very gradual, gentle movement for rehabilitation rather than typical exercise, balancing activity with rest to avoid relapse.",
"name": "Movement therapy as gentle rehabilitation rather than exercise",
"quotes": [
"\u0027...gradually increase ability to move ... one to two minutes a day initially...\u0027",
"\u0027...couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed...\u0027"
],
"slug": "movement-therapy-gentle-rehab"
},
{
"description": "Participant reflects on how illness changed identity, values, spirituality, fostering humility, acceptance, spiritual growth, gratitude and deeper appreciation for life and relationships.",
"name": "Psychological impact and personal growth from chronic illness experience",
"quotes": [
"\u0027It humbled me ... changed me ... i wouldn\u0027t say i had spirituality before\u0027",
"\u0027...illness catapults our growth and puts us in a better direction\u0027"
],
"slug": "psychological-growth-illness"
},
{
"description": "Participant describes anxiety and uncertainty distinguishing pregnancy symptoms from illness relapse, learning self-compassion and cautious optimism about health journey.",
"name": "Fear and anxiety about pregnancy symptoms being illness relapse",
"quotes": [
"\u0027I keep reminding myself these are normal symptoms... fatigue or relapse?\u0027",
"\u0027...normal to have headaches when pregnant, normal to feel tired...\u0027"
],
"slug": "pregnancy-anxiety-relapse"
},
{
"description": "Participant gains essential hope and motivation by seeing recovery stories, highlighting importance of community and shared experience to sustain perseverance through chronic illness.",
"name": "Hope and positivity through seeing others recover from chronic illness",
"quotes": [
"\u0027...so nice to see many people getting past these things\u0027",
"\u0027...people start reaching out to me, i recovered as well...\u0027"
],
"slug": "hope-positivity-others-recover"
},
{
"description": "Participant credits self-education on illness combined with spiritual trust and faith as key to recovery, emphasizing trust in healing process and rejection of limiting prognoses.",
"name": "Self empowerment through knowledge acquisition and faith in recovery",
"quotes": [
"\u0027...had to go through years of research and learning\u0027",
"\u0027It was like getting a bachelor\u2019s degree in chronic illness\u0027"
],
"slug": "self-empowerment-knowledge-faith"
},
{
"description": "Participant describes onset of chronic fatigue as frightening and confusing, with overwhelming health decline requiring university leave and grieving process.",
"name": "Scary and confusing early illness experience",
"quotes": [
"\u0027...felt a bit fluy felt a bit strange felt a bit scared because it felt really weird\u0027",
"\u0027...didn\u0027t know what was going on ... really scary time\u0027"
],
"slug": "scary-confusing-early-illness"
},
{
"description": "Participant felt lonely after returning home separated from university friends, relying primarily on family for support during tough times.",
"name": "Feeling isolated due to illness",
"quotes": [
"\u0027...all my friends from home had gone to university ... didn\u0027t really have anyone other than family\u0027",
"\u0027...it was a very tough time\u0027"
],
"slug": "feeling-isolated-illness"
},
{
"description": "Participant rejected doctor depression diagnosis, believing deeper physical illness despite emotional challenges and depression related to illness.",
"name": "Rejection of depression diagnosis and emotional awareness",
"quotes": [
"\u0027one of the first doctors said she just thought i was depressed\u0027",
"\u0027i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell\u0027"
],
"slug": "reject-depression-diagnosis"
},
{
"description": "Early meditation, yoga and breath work brought some relief and hope though benefits were sometimes temporary and inconsistent during long recovery.",
"name": "Hope from meditation and yoga practices",
"quotes": [
"\u0027...perhaps meditation and yoga can help me heal\u0027",
"\u0027...felt different after doing alternate nostril breathing\u0027"
],
"slug": "hope-meditation-yoga"
},
{
"description": "Participant tried multiple alternative therapies such as acupuncture, reiki, nutrition, colon hydrotherapy out of desperation, with limited or mixed success.",
"name": "Desperation leads to trying various alternative therapies",
"quotes": [
"\u0027...went for reiki and this and that\u0027",
"\u0027...flew to america to work with healer\u0027"
],
"slug": "desperation-trying-therapies"
},
{
"description": "Participant recognized suppressed anger and trauma affecting recovery, identifying emotional blocks and unresolved feelings contributing to physical symptoms.",
"name": "Realization of suppressed anger and unresolved trauma",
"quotes": [
"\u0027...had suppressed anger and unresolved trauma in my system\u0027",
"\u0027...avoiding conflict at all costs\u0027"
],
"slug": "suppressed-anger-trauma"
},
{
"description": "Participant found healing by exploring mind-body link, viewing symptoms as trauma manifestations such as freeze response, and identifying emotional triggers.",
"name": "Mind-body connection and trauma understanding",
"quotes": [
"\u0027...looking at symptoms ... emotion underlying this symptom\u0027",
"\u0027...impact of trauma on my system manifesting physically like a freeze response\u0027"
],
"slug": "mindbody-trauma-understanding"
},
{
"description": "Recovery involved learning to express authentic emotions and needs without fear, employing communication skills to balance self-care and relationships.",
"name": "Learning authentic self-expression and setting boundaries",
"quotes": [
"\u0027learning to be more myself more authentic\u0027",
"\u0027learning non violent communication...\u0027"
],
"slug": "authentic-self-expression"
},
{
"description": "Spiritual awakening, meditation, and mystical experiences were deep and sometimes destabilizing parts of recovery, requiring balance of spiritual insight and daily functioning.",
"name": "Spiritual experience as part of healing journey",
"quotes": [
"\u0027...spiritual awakening\u0027",
"\u0027...felt like connecting with the whole universe\u0027"
],
"slug": "spiritual-experience-healing"
},
{
"description": "Participant manages emotional and trauma symptoms post-recovery with self-regulation strategies including nature exposure and therapeutic work to maintain well-being.",
"name": "Ongoing self-care and regulation post recovery",
"quotes": [
"\u0027...periodically trauma type symptoms\u0027",
"\u0027...go do work with a practitioner or spend night time in nature\u0027"
],
"slug": "ongoing-self-care-post-recovery"
},
{
"description": "Healing journey influenced career towards coaching and therapeutic work, integrating personal recovery insights professionally while continuing learning and practices.",
"name": "Career shift driven by healing experience",
"quotes": [
"\u0027...lots of therapeutic and coaching trainings\u0027",
"\u0027...nearly twenty years working in this field\u0027"
],
"slug": "career-shift-healing"
},
{
"description": "Participant recognizes ancestral and family trauma influencing illness patterns and wider systemic generational factors contributing to chronic fatigue symptoms.",
"name": "Recognizing familial and ancestral trauma impact on health",
"quotes": [
"\u0027...a lot of my trauma wasn\u0027t personal but was ancestral ... from family line\u0027",
"\u0027...illness in one person might be a wider family system issue\u0027"
],
"slug": "familial-ancestral-trauma"
},
{
"description": "Sexual assault and subsequent infection triggered severe exhaustion and ME/CFS symptoms like insomnia, brain fog and digestive issues lasting years.",
"name": "Trauma leading to sudden health crisis and exhaustion",
"quotes": [
"\u0027...sexually assaulted and that led to urinary tract infection ... system blacked out ... flu twenty four seven\u0027",
"\u0027...digestive issues ... hot flashes even though young\u0027"
],
"slug": "trauma-sudden-crisis"
},
{
"description": "Diagnosis brought relief and devastating fear likened to death or life sentence with no cure, causing significant emotional distress.",
"name": "Fear and uncertainty following chronic fatigue syndrome diagnosis",
"quotes": [
"\u0027...so scared ... it was such a death sentence but also a life sentence\u0027",
"\u0027...relieved to have diagnosis ... no cure\u0027"
],
"slug": "fear-uncertainty-diagnosis"
},
{
"description": "Participant resented elimination diets imposed without collaboration, feeling miserable and disempowered rather than active in the healing process.",
"name": "Resentment towards restrictive diets imposed in treatment",
"quotes": [
"\u0027...totally miserable ... taking away anything you enjoy eating\u0027",
"\u0027...felt it was being done to me ... perpetuating trauma\u0027"
],
"slug": "resentment-diets-treatment"
},
{
"description": "Participant emphasizes reclaiming power and collaborating actively in healing process to avoid resentment and improve progress.",
"name": "Regaining personal agency and control in healing journey",
"quotes": [
"\u0027...have to regain my agency and collaboration in healing\u0027",
"\u0027...started realizing with diet ... otherwise i was resenting it\u0027"
],
"slug": "regaining-agency-healing"
},
{
"description": "Despite severe symptoms, participant achieved mental peace and nonresistance through meditation and spiritual connection, aiding emotional adaptation and recovery progress.",
"name": "Experiencing mental peace while symptoms persist",
"quotes": [
"\u0027...internal state of nonresistance or peace ... it just kind of happened\u0027",
"\u0027...watching symptoms but felt peace\u0027"
],
"slug": "mental-peace-symptoms"
},
{
"description": "Learning symptoms result from brain and nervous system stress response shifted participant from helplessness to empowerment to calm nervous system and improve symptoms.",
"name": "Adopting brain and nervous system explanation for ME/CFS symptoms",
"quotes": [
"\u0027...brain and nervous system processing stress ... not sick but stressed\u0027",
"\u0027...brain generates pain fatigue because it senses danger\u0027"
],
"slug": "brain-nervous-sys-fatigue"
},
{
"description": "Self-compassion reduces self-criticism that triggers stress and perpetuates symptoms, enabling emotional regulation and physical improvement.",
"name": "Cultivating self-compassion to manage symptoms and aid recovery",
"quotes": [
"\u0027...self criticism activates danger alarm in brain ... feeds symptoms\u0027",
"\u0027...talk to myself in a compassionate way ... what do you want right now\u0027"
],
"slug": "self-compassion-recovery"
},
{
"description": "Traits like perfectionism, people-pleasing, conscientiousness and emotional suppression contribute to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.",
"name": "Role of personality traits like perfectionism in illness experience",
"quotes": [
"\u0027perfectionist check, people pleasers check ... really conscientious\u0027",
"\u0027holding the emotions ... like a pressure cooker\u0027"
],
"slug": "personality-traits-illness"
},
{
"description": "Therapeutic practices like journaling and psychotherapy help express anger, grief and trauma, releasing emotional pressure contributing to nervous system hypervigilance and symptom worsening.",
"name": "Acknowledging and processing emotions as key to recovery",
"quotes": [
"\u0027...some psychotherapy was helpful ... talk through griefs\u0027",
"\u0027...journaling your anger ... bottled up anger can be very harmful\u0027"
],
"slug": "emotional-processing-key"
},
{
"description": "Talking with someone who understood illness and brain-based mechanisms offered crucial validation and hope, triggering energy and belief in recovery.",
"name": "Finding validation and hope through empathetic connection",
"quotes": [
"\u0027...spent three hours on phone ... finally heard the truth ... gave me hope\u0027",
"\u0027...got up and ran around the block like never before\u0027"
],
"slug": "validation-hope-connection"
},
{
"description": "Participant experienced drop in energy and motivation, leading to extended rest periods and physical symptoms reflecting debilitating impact of CFS/long COVID.",
"name": "Energy loss and fatigue reducing daily activity",
"quotes": [
"\u0027...started to get really tired ... no motivation to do activities...\u0027",
"\u0027...laying in bed would get canker sores ... not feeling the best\u0027"
],
"slug": "energy-loss-fatigue"
},
{
"description": "Participant felt uncertain and doubtful when tests showed normal despite symptoms, leading to exploration of mental health explanations and self-doubt.",
"name": "Frustration from inconclusive medical investigations",
"quotes": [
"\u0027...multiple doctors said everything was perfectly fine ...\u0027",
"\u0027...thought maybe something mentally causing this\u0027"
],
"slug": "frustration-medical-tests"
},
{
"description": "Participant doubted brain retraining programs at first, but upon commitment found them effective for symptom management and anxiety reduction.",
"name": "Initial skepticism towards brain retraining techniques",
"quotes": [
"\u0027...program has hypnosis type of effect ... initially skeptical\u0027",
"\u0027...committed and made a difference\u0027"
],
"slug": "skepticism-brain-retraining"
},
{
"description": "Mental stamina and positive mindset were crucial for progressing from basic function to running a 10k and training for a marathon, highlighting mental role in physical recovery.",
"name": "Importance of mental stamina for physical activity recovery",
"quotes": [
"\u0027...didn\u0027t have mental stamina to do that before...\u0027",
"\u0027...positive affirmations and growth mindset...\u0027"
],
"slug": "mental-stamina-recovery"
},
{
"description": "Encouragement and belief from recovery coach Jason boosted motivation and aided healing, illustrating importance of personal connection in recovery journey.",
"name": "Valuing supportive and personal encouragement during recovery",
"quotes": [
"\u0027...text messages saying i climbed mountain ... i know you can do it\u0027",
"\u0027...great having someone who believes in you that much...\u0027"
],
"slug": "supportive-encouragement"
},
{
"description": "Participant learned to replace disempowering anxiety statements with growth-oriented affirmations fostering positive and hopeful mindset for emotional resilience.",
"name": "Developing empowering self-statements to combat anxiety",
"quotes": [
"\u0027...saying i am anxious is disempowering ... say i am on my way to getting better\u0027",
"\u0027...it\u0027s a journey rather than a stuck state...\u0027"
],
"slug": "empowering-self-statements"
},
{
"description": "Recovery involves ongoing management and coping rather than symptom absence, using tools to handle fluctuations and maintain progress without fear.",
"name": "Recognizing recovery as a journey, not a fixed state",
"quotes": [
"\u0027...have tools to fix that ... life is stressful ... i can refocus\u0027",
"\u0027...journey ... can\u0027t keep comparing yourself...\u0027"
],
"slug": "recovery-is-journey"
},
{
"description": "Participants express frustration with ongoing symptoms and limitations from long COVID, feeling isolated and disconnected from prior healthy life and social connections.",
"name": "Feeling frustrated and isolated due to long COVID limitations",
"quotes": [
"\u0027...feel drained all the time ... used to be active now barely manage walk...\u0027",
"\u0027...people don\u2019t see struggle you go through ... makes you feel alone...\u0027"
],
"slug": "long-covid-frustration-isolation"
},
{
"description": "Participants strongly desire acknowledgement and belief in their long COVID and ME/CFS experience to reduce stigma and obtain emotional support.",
"name": "Desire for understanding and validation from others",
"quotes": [
"\u0027...sometimes it feels like people think it\u2019s in your head...\u0027",
"\u0027...validation would mean the world ... proves not making this up...\u0027"
],
"slug": "desire-understanding-validation"
},
{
"description": "Participants express longing to regain physical energy and resume routine activities without debilitating fatigue, describing simple tasks as exhausting.",
"name": "Need to regain physical energy and return to normal function",
"quotes": [
"\u0027...if i could get some energy back ... feel like myself\u0027",
"\u0027...fatigue so overwhelming even making meal feels like climbing mountain...\u0027"
],
"slug": "regain-physical-energy"
},
{
"description": "Participants discuss ongoing search for treatments that relieve symptoms or bring recovery, facing frustration with lack of clear options and trial and error approaches.",
"name": "Search for effective treatment and cures for symptom relief",
"quotes": [
"\u0027...tried so many treatments but nothing works...\u0027",
"\u0027...keep hoping for a cure to move on with life...\u0027"
],
"slug": "search-effective-treatment"
},
{
"description": "Participants mourn their previous healthy self and struggle with new limitations and changed roles, affecting identity and self-concept.",
"name": "Coping with changes to identity and sense of self",
"quotes": [
"\u0027...don\u2019t recognize person i am now compared to before...\u0027",
"\u0027...hard to accept not doing what used to do...\u0027"
],
"slug": "coping-identity-changes"
},
{
"description": "Anger is a survival physiological response generated by fight or flight sensations causing chronic pain deeply wired in nervous system, uncontrollable by conscious mind.",
"name": "Anger as fight or flight physiology driving chronic pain",
"quotes": [
"\u0027...biggest factor keeping people in pain is anger ... fight or flight sensation\u0027",
"\u0027anger and anxiety are physiological survival responses ... no control\u0027"
],
"slug": "anger-fight-flight"
},
{
"description": "Chronic pain seen as permanent brain memory in pain circuits that cannot be erased; fighting pain reinforces it; acceptance allows separation and symptom reduction.",
"name": "Chronic pain as embedded memory in neuroplastic pain circuits",
"quotes": [
"\u0027...pain circuits absolutely permanent like phantom limb pain\u0027",
"\u0027...fighting pain reinforces it; you learn to separate yourself from pain\u0027"
],
"slug": "pain-memory-neuroplasticity"
},
{
"description": "Unconscious brain processes vast information to keep alive, chronic symptoms arise from physiological threat states beyond conscious control, explaining difficulty managing illness consciously.",
"name": "Unconscious brain drives survival responses and chronic symptoms",
"quotes": [
"\u0027...unconscious brain keeps you alive ... conscious brain only small part\u0027",
"\u0027...can\u0027t control it like dragging with handbrakes\u0027"
],
"slug": "unconscious-brain-survival"
},
{
"description": "Healing requires shifting from fighting pain to letting go and acceptance, reducing reinforcement of pain circuits and creating new neural pathways supporting life on own terms.",
"name": "Letting go of fighting pain as crucial to healing process",
"quotes": [
"\u0027...hardest part is people can\u0027t help but try to fix themselves\u0027",
"\u0027...learn to separate yourself from pain and get on with life\u0027"
],
"slug": "letting-go-fighting-pain"
},
{
"description": "Chronic symptoms including pain, anxiety and depression stem from sustained threat physiology causing nervous system hyperactivity and inflammation, requiring calming physiology rather than only treating symptoms.",
"name": "Threat physiology underlies chronic mental and physical symptoms",
"quotes": [
"\u0027...every chronic disease related to chronic stress\u0027",
"\u0027...anxiety depression bipolar ocd schizophrenia are metabolic inflammatory disorders\u0027"
],
"slug": "threat-physiology-chronic-symptoms"
},
{
"description": "Separating identity from negative intrusive thoughts using therapies reduces physiological arousal caused by thoughts that fuel anxiety and pain.",
"name": "Separating oneself from negative and repetitive thoughts",
"quotes": [
"\u0027...separate from the thoughts that\u0027s where behavior therapy comes into play\u0027",
"\u0027...direct relationship between thoughts and suicide attempts\u0027"
],
"slug": "separating-negative-thoughts"
},
{
"description": "Joy through positive experiences and relationships supports healing by building new neural pathways, countering threat physiology and enabling flourishing beyond pain.",
"name": "Nurturing joy as a vital part of healing journey",
"quotes": [
"\u0027...nurture joy if you\u2019re fighting stress not possible\u0027",
"\u0027...good food good wine good friends promote healing\u0027"
],
"slug": "nurturing-joy-healing"
},
{
"description": "Sleep, diet and exercise foundational for calming nervous system, regulating physiology, reducing inflammation and supporting healing and regeneration.",
"name": "Importance of sleep diet and exercise for calming nervous system",
"quotes": [
"\u0027...address sleep is number one...\u0027",
"\u0027...lack of sleep causes chronic back pain not the way around\u0027"
],
"slug": "sleep-diet-exercise-nervous-system"
},
{
"description": "Physiological nervous system responses overpower conscious brain\u2019s control of symptoms; fight or flight inhibits cognitive function, making conscious efforts insufficient alone.",
"name": "Physiology\u0027s dominance over conscious brain in symptom experience",
"quotes": [
"\u0027...half a million times stronger than conscious brain\u0027",
"\u0027...highest thinking brain neocortex doesn\u2019t work in fight or flight\u0027"
],
"slug": "physiology-over-consciousness"
},
{
"description": "Skepticism is a valid initial stance for learning new healing approaches, encouraging connection to experience and curiosity rather than blind belief to gradually shift physiology and symptoms.",
"name": "Using skepticism as a starting point to engage in healing",
"quotes": [
"\u0027...don\u0027t believe me ... connect to skepticism ... starting point\u0027",
"\u0027...start doing the work now letting your brain change\u0027"
],
"slug": "skepticism-starting-point-healing"
},
{
"description": "A specific book was pivotal for understanding and recovery from chronic pain, resonating with symptoms and personality, influencing therapeutic career choice.",
"name": "Book as key to chronic pain recovery approach",
"quotes": [
"\u0027...book by john sono ... back pain gone ... health problems went away\u0027",
"\u0027...personality characteristics true for me and most clients\u0027"
],
"slug": "book-key-pain-recovery"
},
{
"description": "Intensive Short-Term Dynamic Psychotherapy (ISTDP) is central for chronic pain recovery, focusing on accessing and processing suppressed emotions like anger and rage causing physical pain.",
"name": "Emotion-focused therapy as core to pain recovery process",
"quotes": [
"\u0027...core intervention is emotion focused approach ... all emotions healthy\u0027",
"\u0027...therapy helps notice bodily tension often anxiety about anger or rage\u0027"
],
"slug": "emotion-focused-pain-therapy"
},
{
"description": "Patients face fears and defenses that hinder engagement with emotion-focused therapy; require gradual emotional exposure and support to lower defenses and benefit from treatment.",
"name": "Barriers to engaging with emotion-focused therapy include fear and trust issues",
"quotes": [
"\u0027...some folks work quickly others more complicated with challenges\u0027",
"\u0027...ISTDP difficult but supportive ... gradual emotional threshold building\u0027"
],
"slug": "therapy-engagement-barriers"
},
{
"description": "Medical community increasingly recognizes and integrates emotion-focused therapy for chronic pain, with training, referrals, and scientific support increasing over time.",
"name": "Growing acceptance of emotion-focused therapy among medical professionals",
"quotes": [
"\u0027...most folks come because they accept this approach\u0027",
"\u0027...training doctors in local hospital ... growing recognition\u0027"
],
"slug": "professional-acceptance-therapy"
},
{
"description": "Acceptance of therapy requires paradigm shift from seeing mental health as separate to integrating physical and emotional health, moving from coping to true recovery path.",
"name": "Mindset shift required for accepting therapy as part of recovery",
"quotes": [
"\u0027...mental health and physical health often thought separate\u0027",
"\u0027...therapy seen as coping not to get better initially\u0027"
],
"slug": "mindset-shift-therapy-acceptance"
},
{
"description": "Emotions, especially unacceptable or dangerous ones, are converted into physical symptoms such as chronic pain; MRI research supports this process, validating psychological origins and need for emotional therapy.",
"name": "Understanding emotions as the source of physical pain",
"quotes": [
"\u0027...strategies to ward off dangerous emotions turned into physical pain\u0027",
"\u0027...chronic pain brains light up amygdala responsible for anger and rage\u0027"
],
"slug": "emotions-source-physical-pain"
}
]
},
"prompt": "You are a: Experienced qual researcher\n\nNone\n\nWe are now going to rationalise the set of codes identified across multiple documents. We will consolidate into a single CodeList.\n\n## Preliminary codes\n\n\u003ctext\u003e\ncodes=[Code(slug=\u0027persistent-fatigue-and-energy-drain\u0027, name=\u0027Persistent fatigue and energy drain on standing\u0027, description=\u0027Participant describes extreme exhaustion and a complete drain of energy when trying to stand after lying down, leading to being bedridden for 18 months. This fatigue persisted with partial recovery but never complete, impacting daily functioning for many years.\u0027, quotes=[\"\u0027i was there for the next eighteen months was in bed ... i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely\u0027\", \"\u0027i was able to live a fairly good life but always tired constantly tired\u0027\"]), Code(slug=\u0027overexertion-and-relapse-cycle\u0027, name=\u0027Overexertion leading to relapse and worsening symptoms\u0027, description=\u0027Participant describes a cycle of pushing herself too hard (e.g. walking excessively) which led to picking up viruses and relapse back to debilitating fatigue forcing retirement and severe activity limitations.\u0027, quotes=[\"\u0027then i started overdoing things again i was walking like ten miles every day ... i picked up a couple of viruses ... i woke up ... i just can\u0027t get out of bed i can\u0027t do this again\u0027\", \"\u0027i actually had to retire at that stage and then being retired ... i kept pushing myself pushing myself\u0027\"]), Code(slug=\u0027relentless-pushing-despite-limitations\u0027, name=\u0027Relentless pushing through fatigue despite physical limits\u0027, description=\u0027Despite exhaustion and physical inability to perform basic tasks, participant kept pushing herself to walk and exercise daily, even waking early to get dressed for walking before breakfast, leading to further energy depletion.\u0027, quotes=[\"\u0027i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes ... were in the bathroom ... i just went walking i\u0027d be back by seven eight nine o\u0027clock\u0027\", \"\u0027then i couldn\u0027t really do anything for myself ... i had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else\u0027\"]), Code(slug=\u0027realization-to-accept-lifestyle-changes\u0027, name=\u0027Realization and acceptance of necessary lifestyle changes\u0027, description=\u0027Participant early on did not accept diagnosis fully, maintained denial to an extent, but later realized she needed to make significant lifestyle changes to manage her illness rather than hoping to return to previous activity levels.\u0027, quotes=[\"\u0027i\u0027m not going to give into it but i am going to have to make life changes ... my life is going to have to change from that point of view\u0027\", \"\u0027part of it was just ignorance be part of it\u0027\"]), Code(slug=\u0027brain-retraining-as-a-recovery-path\u0027, name=\u0027Embracing brain retraining as a key to recovery\u0027, description=\"Initial skepticism toward brain retraining shifted to acceptance after understanding it addressed body\u2019s protective response and mental \u0027fight or flight\u0027 mode, leading to participation in program and positive initial results within two weeks.\", quotes=[\"\u0027my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain\u0027\", \"\u0027when he explaining ... your body has switched down some of the genes ... you\u0027re stuck in this fight too much ... it just started making sense\u0027\", \"\u0027i contacted jason and went onto his program because it actually really made sense\u0027\"]), Code(slug=\u0027learning-boundaries-to-manage-energy\u0027, name=\u0027Learning to set boundaries to manage energy and avoid overcommitment\u0027, description=\u0027Participant emphasizes importance of setting personal boundaries like letting phone calls go to voicemail to prevent energy drain and managing social demands, as well as self-monitoring to stop before reaching exhaustion.\u0027, quotes=[\"\u0027if my phone rings i let it go to voicemail so i can deal with it when i want to\u0027\", \"\u0027learning boundaries the hardest for me was learning boundaries\u0027\"]), Code(slug=\u0027difficulty-with-relaxation-and-rest\u0027, name=\u0027Difficulty with relaxation and understanding true rest\u0027, description=\"Participant struggles with relaxation practices like meditation and acknowledges need to retrain herself to understand and accept \u0027real rest\u0027 familiar to healthy individuals but challenging for her to implement consistently.\", quotes=[\"\u0027i\u0027m not good at relaxing ... people say do meditation and this meditation is something i just ... struggled with it\u0027\", \"\u0027now i make myself every day lay down and take a nap or do some meditation ... i\u0027m like real rest\u0027\"]), Code(slug=\u0027frustration-with-misunderstanding-by-others\u0027, name=\u0027Frustration and occasional anger toward others\u2019 misunderstanding of illness\u0027, description=\u0027Participant feels annoyed and flares up when people minimize or misunderstand her illness or recovery, particularly those who never had the illness or who judge her lifestyle choices, emphasizing emotional toll of misunderstanding.\u0027, quotes=[\"\u0027when people say silly things sometimes ... i can flare up\u0027\", \"\u0027i know what i\u0027ve been through ... when somebody minimizes it you can think no\u0027\"]), Code(slug=\u0027maintaining-hope-and-positivity-despite-chronic-illness\u0027, name=\u0027Maintaining hope and positivity despite chronic illness challenges\u0027, description=\u0027Participant highlights her positive and obstinate personality as key factors in her refusal to accept permanent disability and her sustained belief in recovery and improvement despite long-term severe illness.\u0027, quotes=[\"\u0027i\u0027m just a very positive person i think i\u0027m also obstinate\u0027\", \"\u0027never ever felt ... i was almost like in denial\u0027\"]), Code(slug=\u0027self-awareness-to-avoid-overexertion\u0027, name=\u0027Developing self-awareness to avoid overexertion and manage symptoms\u0027, description=\u0027Participant stresses importance of listening to body signals, recognizing triggers, and adjusting activities in timely fashion to prevent relapse and maintain health improvements.\u0027, quotes=[\"\u0027i\u0027ve learnt to listen to myself listen to my body ... work out what my triggers are\u0027\", \"\u0027i can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries\u0027\"])]\ncodes=[Code(slug=\u0027holistic-recovery-focus-mecfs\u0027, name=\u0027Focusing on holistic recovery instead of individual symptoms\u0027, description=\u0027Participants described the importance of focusing on overall body support and holistic healing in managing MECFS rather than trying to treat each symptom individually. Trying to treat isolated symptoms was seen as overwhelming and ineffective, while a comprehensive approach contributed to gradual recovery.\u0027, quotes=[\u0027...my recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole...\u0027, \u0027...targeting the specific symptoms was never healing them in my experience...\u0027, \u0027...i pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone...\u0027]), Code(slug=\u0027symptom-comparison-limitations\u0027, name=\u0027Desire for symptom comparison but finding it unhelpful\u0027, description=\u0027Participants expressed wanting to compare their symptoms with others to find reassurance or hopeful signs of recovery, but found this approach often unhelpful or even misleading. They noted that MECFS symptoms vary widely across individuals, making direct symptom comparisons unproductive and potentially discouraging.\u0027, quotes=[\"...people want to compare their symptoms against mine... to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope...\", \"...if someone is sizing up their illness against my illness and it doesn\u0027t match exactly... that means that they do not have a chance of recovering...\", \"...don\u0027t get too caught up on comparing symptoms... scanning information for what were their test results... it probably won\u0027t help you personally...\"]), Code(slug=\u0027symptom-management-as-palliation-not-cure\u0027, name=\u0027Using symptom management mainly for comfort rather than recovery\u0027, description=\u0027Participants described symptom management during MECFS as largely palliative\u2014to ease discomfort\u2014not a path to cure. Painkillers, sedatives, and other symptom treatments helped manage the suffering temporarily but did not address the underlying illness, which required a broader healing strategy.\u0027, quotes=[\u0027...symptom management that i did was more palliative and not so much about recovery...\u0027, \u0027...if i had pain i might take painkillers or if i was having really bad problems with sleeping... i might go see my doctor and get some prescription sedatives...\u0027, \u0027...targeting the specific symptoms was never healing them in my experience...\u0027]), Code(slug=\u0027need-for-personalized-recovery-plans\u0027, name=\"Need to tailor recovery plans individually to each person\u0027s lifestyle and journey\", description=\"Participants highlighted the importance of creating personalized recovery plans tailored to each individual\u0027s unique symptoms, lifestyle, and disease experience. Recovery methods that worked for one person might not work for another, and pacing and treatments should be adapted accordingly.\", quotes=[\"...somebody\u0027s recovery plan and them selecting the things they want to try needs to be tailored as well...\", \u0027...pacing has to be tailored individually for a particular person because their life is so different...\u0027, \u0027...look at your own life like a scientist without freaking out about everything...\u0027]), Code(slug=\u0027frustration-with-symptom-focused-help-seeking\u0027, name=\u0027Frustration and disappointment from focusing on symptom-specific fixes\u0027, description=\u0027Participants shared feelings of desperation, frustration, and disillusionment from seeking specific symptom fixes through extensive research, treatments, and comparisons. Many attempts, including costly and risky interventions, failed to provide holistic healing, leading to emotional exhaustion and the need to find alternative strategies.\u0027, quotes=[\u0027...i spent thousands of hours googling my symptoms...\u0027, \u0027...this led me to spend thousands of dollars... i almost poisoning myself by buying organic elderberries...\u0027, \"...i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one...\"]), Code(slug=\u0027emotional-boundaries-around-symptom-discussion\u0027, name=\u0027Setting emotional boundaries around discussing past symptoms\u0027, description=\u0027Participants expressed the need to set boundaries around conversations about symptoms, including avoiding one-on-one symptom troubleshooting. Sharing their recovery stories was positive but revisiting symptoms was traumatic and could be overwhelming, necessitating limits to preserve well-being.\u0027, quotes=[\u0027...i now have boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either...\u0027, \"...writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there...\", \u0027...consider that people who share their stories are still human and it might still be fresh their challenges on their journey...\u0027])]\ncodes=[Code(slug=\u0027walking-miracle-gratitude-for-life-38\u0027, name=\u0027Walking miracle gratitude for life after chronic illness\u0027, description=\u0027This code captures the deep appreciation and awe the participant feels about living a life they once only dreamed of due to recovering from chronic illness. They describe moments of enjoying life with childlike wonder and being grateful each day despite small setbacks.\u0027, quotes=[\"I\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible\", \"this joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\", \"It\u0027s like being like when you watch a six year old wandering through the world ... these new eyes where you just get to almost be childlike again\"]), Code(slug=\u0027difficulty-relating-to-healthy-friends-81\u0027, name=\u0027Difficulty relating to healthy friends post illness\u0027, description=\u0027The participant experiences detachment and struggle maintaining friendships with physically healthy friends who complain about their lives. They find it hard to relate to people who seem to take their health for granted and have difficulty understanding those who choose not to engage in activities like working out, which the participant once loved but had to give up.\u0027, quotes=[\"It is hard though to have friends who\u0027ve never been through it ... and they complain about their lives and i just feel such a detachment sometimes\", \"Sometimes it\u0027s hard for me to be their friend now because I\u0027m like you have it all\", \u0027I really struggle with people who seem physically able to go to the gym but just choose not to\u0027, \"I would give anything to (work out) because i love working out so that\u0027s one of my things that i really miss\"]), Code(slug=\u0027diagnosis-delay-and-misdiagnosis-60\u0027, name=\u0027Frustration with delayed diagnosis and misdiagnosis\u0027, description=\"The participant recounts the challenges in receiving an accurate diagnosis. Initially diagnosed with fibromyalgia, their fatigue symptoms were overlooked which delayed appropriate treatment. They express frustration with the medical system\u0027s lack of understanding and care for their chronic fatigue symptoms over many years.\", quotes=[\u0027I was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued\u0027, \"no one would even really treat it i don\u0027t think they really what to do\", \u0027It took a while before i even got the chronic fatigue diagnosis but no one would even really treat it for many years\u0027]), Code(slug=\u0027self-advocacy-for-healthcare-72\u0027, name=\u0027Self advocacy and research to access better healthcare\u0027, description=\u0027The participant took an active role in managing their health by rehabilitating themselves, researching doctors, and eventually moving to access better medical care. They found a nurse practitioner who performed comprehensive blood work and helped identify underlying infections. This proactive approach was crucial for their eventual diagnosis and treatment plan.\u0027, quotes=[\u0027I kept rehabilitate myself ... researching doctors researching as much as i could\u0027, \"Eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors\", \u0027She was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that\u0027]), Code(slug=\u0027genetic-condition-discovery-and-treatment-75\u0027, name=\u0027Discovery and treatment of genetic mitochondrial disease\u0027, description=\u0027The participant was diagnosed with a rare mitochondrial disease through full genome testing. This diagnosis explained their inability to fight infections and fatigue. Treatment included a mitochondrial cocktail which helped their body produce mitochondria and regain strength to combat infections, marking a turning point in their recovery.\u0027, quotes=[\u0027I did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven\u0027, \"He put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections\", \u0027By him supplementing and boosting my mitochondria i could now fight the infections\u0027]), Code(slug=\u0027drastic-lifestyle-changes-for-recovery-81\u0027, name=\u0027Drastic lifestyle changes including diet and environment for recovery\u0027, description=\u0027The participant emphasizes the importance of significant lifestyle modifications for healing including an elimination diet, gradual movement rehabilitation, and removing environmental toxins. Specific dietary changes involved cutting out dairy, gluten, sugar, and nightshades, which were once inflammatory but sometimes reintroduced gradually.\u0027, quotes=[\u0027I had to dramatically change my diet ... use food as medicine as a mindset\u0027, \u0027I removed all toxic ingredients immunotoxic i water filtration system on my house\u0027, \u0027Dairy gluten and sugar were main offenders and nightshades bothered me for a while\u0027]), Code(slug=\u0027overcoming-sugar-addiction-for-healing-56\u0027, name=\u0027Overcoming intense sugar addiction to support healing\u0027, description=\u0027The participant describes an intense physical addiction to sugar that disrupted their health and sleep patterns. Through gut healing and probiotics, cravings diminished, allowing them to develop a healthier relationship with food and regain control over their eating habits, marking an important step in recovery.\u0027, quotes=[\u0027Sugar was a massive one for me and sugar was a tough one for me ... i clearly had a physical addiction\u0027, \u0027I would get up in the middle of the night every single night and eat sugar\u0027, \u0027Once my body started healing the cravings went away\u0027]), Code(slug=\u0027movement-therapy-as-gentle-rehab-63\u0027, name=\u0027Movement therapy as gentle rehabilitation rather than exercise\u0027, description=\u0027The participant highlights the importance of very gradual and gentle movement therapy rather than typical exercise. They emphasize the challenges of balancing activity and rest in chronic fatigue syndrome, noting that even a few minutes of movement can be critical for oxygenation and lymphatic flow while avoiding pushing to the point of relapse.\u0027, quotes=[\u0027I had to gradually increase my ability to move\u0027, \u0027My exercise program was so small you know it was one to two minutes a day and in the beginning not even every single day\u0027, \u0027I couldn\u2019t rest my way out of this i couldn\u2019t just lay in bed or lay on the couch all day\u0027]), Code(slug=\u0027psychological-impact-and-growth-from-illness-80\u0027, name=\u0027Psychological impact and personal growth from chronic illness experience\u0027, description=\u0027The participant reflects on how chronic illness fundamentally changed their identity, values, and spirituality. They describe feelings of humility, acceptance, and deeper self-worth beyond professional achievements. The illness brought perspective, spiritual growth, gratitude, and a renewed appreciation for life and relationships.\u0027, quotes=[\u0027It humbled me changed me i maybe was prideful before i wouldn\u2019t say i had a spirituality before\u0027, \u0027I had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\u0027, \u0027this illness catapults our growth and puts us in a better direction\u0027]), Code(slug=\u0027fear-and-anxiety-during-pregnancy-after-illness-64\u0027, name=\u0027Fear and anxiety about pregnancy symptoms being illness relapse\u0027, description=\u0027The participant shares the anxiety and uncertainty during pregnancy about whether normal pregnancy symptoms like fatigue and headaches signal illness relapse. They learn to differentiate normal pregnancy experiences from chronic illness symptoms, practicing self-compassion and cautious optimism about their health journey.\u0027, quotes=[\"I keep reminding myself these are normal symptoms it\u0027s triggering sometimes to be like is this normal fatigue or is this going back\", \u0027I keep reminding myself no it\u2019s normal to have headaches when you\u2019re pregnant it\u2019s normal to feel tired\u0027, \u0027It has been quite a journey i keep reminding myself sometimes\u0027]), Code(slug=\u0027hope-and-positivity-in-chronic-illness-recovery-57\u0027, name=\u0027Hope and positivity through seeing others recover from chronic illness\u0027, description=\u0027The participant expresses how seeing recovery stories from others provides essential hope and motivation for their own healing journey. They highlight the loneliness and despair without such examples and stress the importance of community and shared experiences in sustaining perseverance through chronic illness.\u0027, quotes=[\"It\u0027s so nice to see so many people that are getting past these things\", \u0027I remember when i first got sick i was trying to find recovery stories and i just couldn\u2019t find any\u0027, \"People start reaching out to me it\u0027s crazy like hey so nice to meet you you recovered as well\"]), Code(slug=\u0027self-empowerment-through-knowledge-and-faith-64\u0027, name=\u0027Self empowerment through knowledge acquisition and faith in recovery\u0027, description=\"The participant credits their recovery journey to extensive self-education about their condition combined with their faith and spiritual trust. They emphasize the importance of trusting the healing process and rejecting limiting prognoses, comparing learning about illness to earning a \u0027bachelor\u2019s degree\u0027 in chronic illness.\", quotes=[\u0027I would just tell myself to trust that process\u0027, \u0027I had to go through all those years of research and learning\u0027, \u0027It was like getting a bachelor\u2019s degree in chronic illness\u0027, \u0027You cannot limit a limitless guy\u0027])]\ncodes=[Code(slug=\u0027scary-and-confusing-early-illness-experience\u0027, name=\u0027Scary and confusing early illness experience\u0027, description=\u0027Participant describes the initial onset of chronic fatigue as confusing, frightening, and strange with symptoms that were hard to understand and manage. She was overwhelmed by sudden health decline and had to leave university, indicating a disruptive and scary period.\u0027, quotes=[\"i just didn\u0027t feel well at all... felt a bit fluy felt a bit strange felt a bit scared because it felt really weird\", \"i didn\u0027t know what was going on\", \"it was a really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed\"]), Code(slug=\u0027feeling-isolated-due-to-illness\u0027, name=\u0027Feeling isolated due to illness\u0027, description=\u0027Participant felt isolated because she had to return home and was separated from her friends who were still attending university, leading to feelings of loneliness with limited social support beyond family.\u0027, quotes=[\"all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family\", \u0027it was a very tough time\u0027]), Code(slug=\u0027rejection-of-depression-diagnosis-and-emotional-awareness\u0027, name=\u0027Rejection of depression diagnosis and emotional awareness\u0027, description=\"Participant rejected doctors\u0027 initial diagnosis of depression as the sole cause, sensing a deeper underlying physical illness despite emotional challenges and some depressive feelings related to her illness.\", quotes=[\u0027one of the first doctors said she just thought i was depressed that was it\u0027, \"i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell\"]), Code(slug=\u0027hope-from-meditation-and-yoga-practices\u0027, name=\u0027Hope from meditation and yoga practices\u0027, description=\u0027Early engagement with meditation, yoga, and breath work brought short-lived improvements, offering participant moments of hope and relief, though benefits were often temporary and inconsistent over long recovery.\u0027, quotes=[\u0027i thought i did think quite early on well perhaps meditation and yoga can help me heal\u0027, \u0027doing the alternate nostril breathing and noticing i felt different after doing it\u0027, \"sometimes i\u0027d notice i felt considerably better after doing one\"]), Code(slug=\u0027desperation-leads-to-trying-various-alternative-therapies\u0027, name=\u0027Desperation leads to trying various alternative therapies\u0027, description=\u0027Participant pursued numerous alternative therapies out of desperation including acupuncture, reiki, nutrition therapy, and colon hydrotherapy, often with limited or mixed success, reflecting urgent search for a cure.\u0027, quotes=[\"i\u0027d go for reiki and i\u0027d go for this and i go for that\", \u0027i even flew to america...to work with a healer\u0027, \u0027just loads of things i was i was so desperate to be well\u0027]), Code(slug=\u0027realization-of-suppressed-anger-and-unresolved-trauma\u0027, name=\u0027Realization of suppressed anger and unresolved trauma\u0027, description=\u0027Participant identified a deep pattern of suppressing anger and unreleased trauma impacting her recovery, acknowledging emotional blocks and the role of unresolved feelings in her physical symptoms.\u0027, quotes=[\"i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\", \u0027one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs\u0027]), Code(slug=\u0027mind-body-connection-and-trauma-understanding\u0027, name=\u0027Mind-body connection and trauma understanding\u0027, description=\u0027Participant found significant healing through acknowledging the mind-body link, understanding symptoms as manifestations of trauma such as freeze responses, and exploring emotional triggers underlying physical states.\u0027, quotes=[\u0027it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom\u0027, \u0027a lot of it was the impact of trauma on my system manifesting physically like a freeze response\u0027, \u0027started to really understand the mind body connection\u0027]), Code(slug=\u0027learning-authentic-self-expression-and-setting-boundaries\u0027, name=\u0027Learning authentic self-expression and setting boundaries\u0027, description=\u0027Recovery involved learning to express authentic emotions and needs without fear of upsetting others, using communication skills like non-violent communication to balance self-care and relationships.\u0027, quotes=[\u0027learning to be more myself more authentic\u0027, \u0027learning non violent communication... a way that i could communicate my feelings without it also being too much for someone else\u0027, \"it\u0027s okay to have needs\"]), Code(slug=\u0027spiritual-experience-as-part-of-healing-journey\u0027, name=\u0027Spiritual experience as part of healing journey\u0027, description=\u0027Spiritual awakening, meditation, and mystical experiences were deeply meaningful but sometimes destabilizing aspects of the recovery journey, requiring learning to balance spiritual insights with daily functioning.\u0027, quotes=[\u0027i had a kundalini or spiritual some kind of spiritual awakening\u0027, \u0027sometimes i felt like i left my body and i was like connecting with the whole universe\u0027, \u0027i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way\u0027]), Code(slug=\u0027ongoing-self-care-and-regulation-post-recovery\u0027, name=\u0027Ongoing self-care and regulation post recovery\u0027, description=\u0027Even years after recovery, participant still needed to manage emotional and trauma-related symptoms with self-regulation strategies like nature exposure and therapeutic work to maintain balance and well-being.\u0027, quotes=[\u0027i did have periodically sort of what i would now describe as trauma type symptoms\u0027, \"i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature\", \u0027that can still happen today but not to the extent it was\u0027]), Code(slug=\u0027career-shift-driven-by-healing-experience\u0027, name=\u0027Career shift driven by healing experience\u0027, description=\"Participant\u0027s prolonged healing journey influenced her career choice toward coaching and therapeutic work, integrating personal recovery insights into professional roles and continuous learning.\", quotes=[\"i\u0027ve done lots of different kinds of therapeutic and coaching trainings\", \u0027been working in this field myself nearly twenty years\u0027, \u0027i do keep up quite a few of the practices that support me to heal and new practices\u0027]), Code(slug=\u0027recognizing-familial-and-ancestral-trauma-impact-on-health\u0027, name=\u0027Recognizing familial and ancestral trauma impact on health\u0027, description=\u0027Participant highlights the role of ancestral and family line trauma influencing illness patterns, recognizing wider systemic and generational factors contributing to chronic fatigue symptoms.\u0027, quotes=[\"a lot of my trauma wasn\u0027t necessarily personal but was ancestral... took on from my family line\", \u0027sometimes... an illness in one person might not be the root but a wider family system issue\u0027])]\ncodes=[Code(slug=\u0027trauma-led-health-crisis\u0027, name=\u0027Trauma leading to sudden health crisis and exhaustion\u0027, description=\u0027Participant describes a traumatic sexual assault and subsequent intense physical illness (urinary tract infection during long flight) that triggered sudden, severe exhaustion and ME/CFS symptoms such as insomnia, brain fog, and digestive issues lasting for years.\u0027, quotes=[\"i was sexually assaulted and that led to a really grueling urinary tract infection... whole system just kind of blacked out... i just went totally kaput i felt like i had the flu twenty four seven... i felt like i couldn\u0027t remember the name of... digestive issues... hot flashes and pre menopausal symptoms even though i was so young\"]), Code(slug=\u0027fear-and-uncertainty-after-diagnosis\u0027, name=\u0027Fear and uncertainty following chronic fatigue syndrome diagnosis\u0027, description=\u0027Upon receiving the chronic fatigue syndrome diagnosis, the participant experienced a mix of relief for having an explanation and devastating fear, likening the prognosis to a death or life sentence with no cure and ongoing suffering.\u0027, quotes=[\u0027you know i was so scared... i remember bawling... it was such a death sentence but in a way a life sentence that i was given that i would have to live with for years\u0027, \"on the one hand i was relieved to have a diagnosis... on the other hand it was really devastating... a natural path doctor said there\u0027s no cure\"]), Code(slug=\u0027resentment-towards-prescribed-diets\u0027, name=\u0027Resentment towards restrictive diets imposed in treatment\u0027, description=\u0027The participant describes feeling misery and resentment towards elimination diets (gluten-free, sugar-free, dairy-free) and restrictions imposed by medical and natural health practitioners that were not collaboratively chosen and felt imposed rather than empowering.\u0027, quotes=[\"it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating\", \"i felt like it was being done to me... actually he said you know what i think that\u0027s perpetuating the trauma\", \"there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing\"]), Code(slug=\u0027regaining-agency-in-healing\u0027, name=\u0027Regaining personal agency and control in healing journey\u0027, description=\u0027Participant highlights the importance of reclaiming personal power and actively collaborating in their healing process, as opposed to passively following medical instructions, which increased resentment and hindered healing progress.\u0027, quotes=[\u0027at some point i have to regain my agency and my power and my collaboration in my healing\u0027, \u0027i started realizing with diet and everything else... otherwise i was resenting it\u0027, \"someone sees me and i didn\u0027t even know that\u0027s how i felt\"]), Code(slug=\u0027mental-peace-despite-physical-symptoms\u0027, name=\u0027Experiencing mental peace while symptoms persist\u0027, description=\u0027Despite ongoing severe physical symptoms, participant describes achieving a mental state of peace and nonresistance through meditation and spiritual connection, observing symptoms without emotional struggle, which aided emotional coping and eventual recovery progress.\u0027, quotes=[\"there was this internal state of nonresistance or peace... and it really wasn\u0027t something i tried to do... it just kind of happened\", \u0027i was kind of watching the symptoms but felt peace\u0027, \u0027i really started meditating and practicing yoga and that sense of spiritual connection really helped\u0027]), Code(slug=\u0027brain-based-explanation-for-fatigue-symptoms\u0027, name=\u0027Adopting brain and nervous system explanation for ME/CFS symptoms\u0027, description=\"Learning that symptoms are perpetuated by brain and nervous system\u0027s stress response and not directly by viruses or physical damage gave participant hope and understanding, shifting from feeling helpless to empowered to calm the nervous system.\", quotes=[\u0027she explained all these viruses were suppressing the immune system... but it was how her brain and nervous system were processing stress\u0027, \"she said \u0027you\u0027re not sick, you\u0027re stressed, your system is stuck in this pattern\u0027\", \u0027the brain generates pain... fatigue because it senses danger... danger can be psychological as well as physical\u0027]), Code(slug=\u0027self-compassion-supporting-recovery\u0027, name=\u0027Cultivating self-compassion to manage symptoms and aid recovery\u0027, description=\u0027Participant emphasizes that adopting self-compassion and kindness toward oneself reduces self-criticism that otherwise triggers stress and perpetuates symptoms, enabling more effective emotional regulation and eventual physical improvement.\u0027, quotes=[\u0027self criticism actually does activate the danger alarm in the brain... so it can feed into symptoms\u0027, \"i just talk to myself in a compassionate way... i\u0027m so sorry... what do you want or need right now\", \u0027to realize having compassion on ourselves is helpful and can soften the blow\u0027]), Code(slug=\u0027impact-of-personality-on-symptom-perpetuation\u0027, name=\u0027Role of personality traits like perfectionism in illness experience\u0027, description=\u0027Perfectionism, people-pleasing, conscientiousness and holding in emotions were discussed as personality traits common in those with ME/CFS, contributing to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.\u0027, quotes=[\u0027perfectionist check, people pleasers check... really conscientious, hard driving\u0027, \"holding the emotions... it\u0027s kind of like a pressure cooker\", \u0027people who get cfs are really nice people but they hold in emotions\u0027]), Code(slug=\u0027importance-of-emotional-processing\u0027, name=\u0027Acknowledging and processing emotions as key to recovery\u0027, description=\u0027Participant shares therapeutic practices like journaling and psychotherapy that helped them express anger, grief, and trauma, releasing emotional pressure that contributed to nervous system hypervigilance and symptom worsening.\u0027, quotes=[\u0027some psychotherapy was helpful... talk through griefs\u0027, \u0027i did some journaling... just to get out frustration i was too nice to say to anyone\u0027, \u0027journaling your anger... bottled up anger can be very harmful\u0027]), Code(slug=\u0027validation-and-hope-from-connection\u0027, name=\u0027Finding validation and hope through empathetic connection\u0027, description=\u0027Talking with someone who truly understood the illness experience and explained the brain-based mechanism provided a critical moment of validation and hope, leading to a spontaneous increase in energy and belief in recovery.\u0027, quotes=[\u0027she cared a lot... spent three hours on the phone with me\u0027, \u0027i felt like i finally heard the truth... it gave me hope\u0027, \u0027after that conversation i got up and ran around the block like i had not ran in thirteen years\u0027])]\ncodes=[Code(slug=\u0027energy-loss-and-fatigue-in-cfs-long-covid\u0027, name=\u0027Energy loss and fatigue reducing daily activity\u0027, description=\u0027Participant experienced a noticeable drop in energy and motivation to engage in usual activities, leading to extended periods of rest and physical symptoms like canker sores, reflecting the debilitating impact of CFS/long COVID on daily life.\u0027, quotes=[\"...i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities...\", \u0027...laying in bed i would get these canker sores and just overall not feeling the best\u0027]), Code(slug=\u0027frustration-of-inconclusive-medical-tests\u0027, name=\u0027Frustration from inconclusive medical investigations\u0027, description=\u0027Participant felt frustration and uncertainty when medical tests showed normal results despite ongoing symptoms, leading to self-doubt about the origin of symptoms and exploration of mental health explanations.\u0027, quotes=[\u0027...i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work...\u0027, \u0027...thought maybe it was something mentally that was causing this\u0027]), Code(slug=\u0027initial-skepticism-of-brain-retraining-technique\u0027, name=\u0027Initial skepticism towards brain retraining techniques\u0027, description=\u0027Participant was initially doubtful about the efficacy of brain retraining and hypnosis-related methods but committed to the program and found these techniques effective for symptom management and anxiety reduction.\u0027, quotes=[\u0027...in the beginning i was a little skeptical because the program does have like a hypnosis type of effect...\u0027, \u0027...once i really committed to learning the program it really made a difference\u0027]), Code(slug=\u0027importance-of-mental-stamina-for-active-recovery\u0027, name=\u0027Importance of mental stamina for physical activity recovery\u0027, description=\u0027Participant emphasized the growth in mental stamina and positive mindset as critical to progressing from basic functioning to running a 10k and training for a marathon, showing the mental aspects integral to physical recovery.\u0027, quotes=[\"...before i don\u0027t think i would have had the mental stamina to do that...\", \u0027...now i just have that positive affirmations and changing the way of my mindset from fix to growth...\u0027]), Code(slug=\u0027valuing-supportive-encouragement-in-recovery\u0027, name=\u0027Valuing supportive and personal encouragement during recovery\u0027, description=\u0027Participant highlighted how personalized encouragement and belief from program coach Jason boosted motivation and aided recovery, illustrating the importance of personal connection in healing journeys.\u0027, quotes=[\"...he would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great...\", \"...it\u0027s just great having someone who believes in you that much...\"]), Code(slug=\u0027developing-empowering-self-statements\u0027, name=\u0027Developing empowering self-statements to combat anxiety\u0027, description=\u0027Participant learned to replace disempowering anxiety statements with growth-oriented affirmations, facilitating a more positive and hopeful mindset conducive to ongoing recovery and emotional resilience.\u0027, quotes=[\"...i didn\u0027t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better...\", \"...that\u0027s more of a journey rather than oh i\u0027m stuck at this state of anxiety...\"]), Code(slug=\u0027recognizing-the-journey-of-recovery-not-a-fix\u0027, name=\u0027Recognizing recovery as a journey, not a fixed state\u0027, description=\u0027Participant expressed understanding that recovery involves ongoing management rather than complete absence of symptoms, using tools to address fluctuations and maintain progress without fear.\u0027, quotes=[\"...i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools...\", \"...you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been...\"])]\ncodes=[Code(slug=\u0027long-covid-frustration-and-isolation\u0027, name=\u0027Feeling frustrated and isolated due to long COVID limitations\u0027, description=\u0027Participants express frustration with the ongoing symptoms and limitations imposed by long COVID, highlighting feelings of isolation and disconnection from their former healthy selves and social life. This includes struggles with physical and cognitive impairments and the emotional toll of not being understood.\u0027, quotes=[\u0027...I just feel so drained all the time, like I used to be so active and now I can barely manage a short walk...\u0027, \"...people don\u0027t see the struggle you go through every day, it makes you feel very alone...\", \u0027...it\u2019s frustrating because you want to get better but the symptoms just keep dragging you down...\u0027]), Code(slug=\u0027desire-for-understanding-and-validation\u0027, name=\u0027Desire for understanding and validation from others\u0027, description=\u0027Participants highlight a strong need for others to acknowledge and believe their experience with long COVID and ME/CFS, as they often face skepticism or misunderstanding. This recognition is crucial for emotional support and reducing the stigma they encounter.\u0027, quotes=[\u0027...sometimes it feels like people think it\u2019s all in your head...\u0027, \u0027...I just want doctors and my family to really understand what I\u2019m going through...\u0027, \u0027...validation would mean the world because it proves that I\u2019m not making this up...\u0027]), Code(slug=\u0027need-to-regain-physical-energy-and-function\u0027, name=\u0027Need to regain physical energy and return to normal function\u0027, description=\u0027A consistent desire to regain lost physical energy and resume activities that were previously routine is expressed. Participants describe longing to be able to do simple physical tasks, exercise, and engage in social and work activities without debilitating fatigue.\u0027, quotes=[\u0027...if I could just get some of my energy back, I\u2019d feel like myself again...\u0027, \u0027...I miss being able to just go for a jog or play with my kids without getting exhausted...\u0027, \u0027...the fatigue is so overwhelming that even making a meal feels like climbing a mountain...\u0027]), Code(slug=\u0027search-for-effective-treatment-and-cures\u0027, name=\u0027Search for effective treatment and cures for symptom relief\u0027, description=\u0027Participants discuss their ongoing search for treatments or interventions that can bring relief from symptoms or lead to recovery. This includes frustration at the lack of clear treatments and the trial and error of various therapies.\u0027, quotes=[\u0027...I\u2019ve tried so many treatments, but nothing seems to really work...\u0027, \u0027...it\u2019s heartbreaking to not find anything that helps the pain or fatigue...\u0027, \u0027...I keep hoping for a cure that will help me move on with my life...\u0027]), Code(slug=\u0027coping-with-identity-changes\u0027, name=\u0027Coping with changes to identity and sense of self\u0027, description=\u0027Participants reflect on the impact the illness has had on their identity and sense of self, expressing a mourning for their previous healthy self and struggling with the new limitations and changed roles in relationships and life.\u0027, quotes=[\u0027...I don\u2019t recognize the person I am now compared to before...\u0027, \u0027...it\u2019s hard to accept that I can\u2019t do what I used to do...\u0027, \u0027...sometimes I feel like I\u2019ve lost who I was...\u0027])]\ncodes=[Code(slug=\u0027anger-fight-flight-physiology-chronic-pain\u0027, name=\u0027Anger as fight or flight physiology driving chronic pain\u0027, description=\u0027Participants describe anger not as a psychological issue but as a physiological survival response generated by fight or flight sensations in the body. This intense physiological arousal leads to chronic pain and symptoms that are deeply wired in their nervous system, making them uncontrollable by conscious mind alone.\u0027, quotes=[\"the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight\", \u0027anger and anxiety are physiological survival responses that we have no control over zero\u0027, \u0027anger and anxiety are gifts i mean how you survive without anger and anxiety\u0027]), Code(slug=\u0027chronic-pain-neuroplasticity-memory-pain-circuits\u0027, name=\u0027Chronic pain as embedded memory in neuroplastic pain circuits\u0027, description=\"Chronic pain is explained as an embedded memory in the brain\u0027s pain circuits that cannot be erased. Participants feel their pain persists because the brain memorizes the pain experience permanently, similar to phantom limb pain. Fighting the pain reinforces these circuits, while acceptance and new living patterns enable transcendence and symptom reduction.\", quotes=[\u0027the pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone\u0027, \u0027the more you try to fight it and solve it the more you reinforce it\u0027, \"you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain\"]), Code(slug=\u0027role-of-unconscious-brain-in-survival-and-pain\u0027, name=\u0027Unconscious brain drives survival responses and chronic symptoms\u0027, description=\u0027Participants express how the unconscious brain processes millions of bits of information per second to keep them alive, without needing the conscious brain. Chronic symptoms arise from unconscious physiological threat states that the conscious brain struggles to control, explaining difficulty in managing chronic illness through conscious effort alone.\u0027, quotes=[\u0027the unconscious brain keeps you alive we do not need conscious brain to stay alive\u0027, \u0027the unconscious brain is eleven million bits of your patient per second the conscious brain is forty\u0027, \"you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes\"]), Code(slug=\u0027letting-go-fighting-pain-key-to-healing\u0027, name=\u0027Letting go of fighting pain as crucial to healing process\u0027, description=\u0027Participants describe a shift from actively trying to fix or fight their pain towards letting go and accepting it as key to healing. This change in relationship towards pain reduces reinforcement of pain circuits, enables separation from pain, and supports creating new, pain-free neural pathways through living life on their own terms.\u0027, quotes=[\"the hardest part of this project by far is people can\u0027t help but try to fix themselves\", \u0027you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain\u0027, \"the pain she or you\u0027re here as you start getting on with your life the way you want to your terms that\u0027s the solution\"]), Code(slug=\u0027threat-physiology-explains-chronic-symptoms\u0027, name=\u0027Threat physiology underlies chronic mental and physical symptoms\u0027, description=\u0027Participants reveal that chronic symptoms, including pain, anxiety, depression and other diseases, stem from sustained threat physiology involving hyperactive nervous system responses and inflammation. This state breaks down the body over time and maintains symptoms, emphasizing the need to calm the physiology rather than solely treat symptoms.\u0027, quotes=[\u0027every chronic disease with few exceptions are related to chronic stress\u0027, \u0027the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really\u0027, \u0027chronic fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress\u0027]), Code(slug=\u0027separation-from-negative-thoughts-in-pain\u0027, name=\u0027Separating oneself from negative and repetitive thoughts\u0027, description=\u0027Participants highlight the importance of separating their identity from negative intrusive thoughts and repetitive thought patterns that fuel anxiety and pain. Techniques like expressive writing, mindfulness and cognitive behavioral therapy help create this separation, reducing the physiological arousal that these thoughts cause.\u0027, quotes=[\"separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play\", \u0027if you work with that much so that separates you from the thoughts not solving them to say thought separation process\u0027, \u0027by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing\u0027]), Code(slug=\u0027nurturing-joy-for-chronic-pain-healing\u0027, name=\u0027Nurturing joy as a vital part of healing journey\u0027, description=\u0027Participants emphasize nurturing joy through positive experiences, relationships, and mindset as essential for healing chronic pain and symptoms. Joy helps build new neural pathways, counterbalances threat physiology, and supports a flourishing life beyond pain rather than solely focusing on fixing negative symptoms.\u0027, quotes=[\"the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible\", \"you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing\", \"you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs\"]), Code(slug=\u0027importance-of-sleep-diet-exercise-in-nervous-system-calm\u0027, name=\u0027Importance of sleep diet and exercise for calming nervous system\u0027, description=\u0027Participants discuss sleep, diet, and exercise as foundational pillars to calm the nervous system and support healing. Lack of sleep contributes directly to chronic pain development, and improving these areas helps regulate physiology, reduce inflammation, and promote regeneration, forming an essential part of recovery processes.\u0027, quotes=[\"if you address sleep is number one people weren\u0027t sleeping\", \u0027lack of sleep actually causes chronicle back pain not the way around\u0027, \u0027sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system\u0027]), Code(slug=\u0027role-of-physiology-over-conscious-control\u0027, name=\"Physiology\u0027s dominance over conscious brain in symptom experience\", description=\u0027Participants relate that physiological responses in the nervous system vastly overpower the conscious brain\u2019s ability to control thoughts or symptoms. Fight or flight states inhibit neocortex functions and cognitive thinking, resulting in automatic reactions and making conscious efforts insufficient to manage symptoms alone.\u0027, quotes=[\"it\u0027s about half a million times stronger than your conscious brain\", \"when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work\", \"by the time you think about it so let\u0027s have a thoughts for second\"]), Code(slug=\u0027skepticism-as-starting-point-for-healing-engagement\u0027, name=\u0027Using skepticism as a starting point to engage in healing\u0027, description=\u0027Participants express that skepticism is a natural and valid initial stance for people learning this approach. Encouraging embracing skepticism helps people start the healing journey by connecting with their own experience rather than blind belief, promoting curiosity and gradual learning to shift physiology and symptoms.\u0027, quotes=[\"i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said\", \"the key is connect to what\u0027s in there which is skepticism\", \u0027connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change\u0027])]\ncodes=[Code(slug=\u0027book-as-key-to-chronic-pain-recovery\u0027, name=\u0027Book as key to chronic pain recovery approach\u0027, description=\u0027The participant found a specific book by Dr. John Sarno pivotal in understanding and recovering from chronic pain and multiple other health issues. This self-help resource resonated deeply with their symptoms and personality, leading to significant healing and influencing their therapeutic career.\u0027, quotes=[\u0027i found a book by a guy named john sono... my back pain was gone within a few months ... a lot of other health problems i had suffered with for years went away\u0027, \u0027sorrow said that a lot of people could get better just by reading the book\u0027, \u0027the symptoms right the fact that i had always had something really since i was a kid ... it was really resonating\u0027, \u0027the personality characteristics... were so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions\u0027]), Code(slug=\u0027emotion-focused-therapy-for-pain\u0027, name=\u0027Emotion-focused therapy as core to pain recovery process\u0027, description=\"Emotion-focused therapy, particularly Intensive Short-Term Dynamic Psychotherapy (ISTDP), is central to the participant\u0027s approach to chronic pain recovery. It focuses on safely accessing and processing suppressed emotions, especially anger and rage, which manifest as physical pain.\", quotes=[\u0027the core of the intervention is this emotion focused approach... all emotions are healthy... we learn to disconnect from these emotions\u0027, \u0027we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain\u0027, \u0027brain pain research shows chronic pain lights up the amygdala which is responsible for emotions anger rage\u0027, \u0027ISTDP therapy allows patients to notice their bodily tension which is often anxiety about feeling anger or rage, helping them process these emotions\u0027]), Code(slug=\u0027barriers-to-therapy-engagement-and-trust\u0027, name=\u0027Barriers to engaging with emotion-focused therapy include fear and trust issues\u0027, description=\u0027The participant acknowledges that many patients struggle with engaging in ISTDP therapy due to fears, defenses, and trust issues. Therapy requires gradual emotional exposure at a tolerable pace to avoid setbacks, with some patients needing more time and support to lower their defenses and benefit.\u0027, quotes=[\"some folks can work through the process very quickly... but others it\u0027s more complicated and harder\", \u0027i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions\u0027, \u0027ISTDP is incredibly difficult but supportive... it requires building emotional threshold gradually\u0027, \u0027some people resist because dealing with emotions is hard work, their symptoms can flare up as they engage emotionally\u0027]), Code(slug=\u0027transformation-in-professional-acceptance\u0027, name=\u0027Growing acceptance of emotion-focused therapy among medical professionals\u0027, description=\"Over time, there has been significant progress in the medical and professional community\u0027s acceptance of emotion-focused therapy for chronic pain, with increased training and referrals. Despite previous stigma, doctors now recognize the scientific support and therapeutic benefits, leading to more integration in treatment.\", quotes=[\u0027most of the folks that i work with come to me because they know and understand and accept this\u0027, \"i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work\", \u0027medical schools are starting to have pain curriculum now and look towards scientifically supported approaches\u0027, \u0027doctors call me to see patients because there is a growing recognition of this approach\u0027]), Code(slug=\u0027mindset-shift-needed-for-therapy-acceptance\u0027, name=\u0027Mindset shift required for accepting therapy as part of recovery\u0027, description=\u0027Many patients initially see therapy only as coping rather than a true recovery pathway. The participant highlights the need for a paradigm shift from viewing mental health as separate to understanding physical and emotional health integration to accept emotion-focused therapy as a vital part of healing chronic pain.\u0027, quotes=[\u0027most of us think of our mental health and physical health as two separate things\u0027, \"addressing your mental health stuff is a nice to have when i was really sick i started going into therapy but it wasn\u0027t to make myself get better it was just to help me cope\", \u0027this is such a change in mindset and our understanding to see this as part of their path to getting better\u0027]), Code(slug=\u0027emotions-understood-as-physical-pain-source\u0027, name=\u0027Understanding emotions as the source of physical pain\u0027, description=\u0027The participant explains how emotions, especially those deemed unacceptable or dangerous, are converted into physical symptoms like chronic pain, supported by MRI studies. This understanding validates the psychological origins of pain and the need to address emotions therapeutically rather than focusing solely on structural damage.\u0027, quotes=[\u0027sometimes we develop strategies to ward off these uncomfortable or dangerous emotions and for chronic pain patients it tends to be physical pain\u0027, \u0027MRI research supports the process of emotions transforming into physical form\u0027, \u0027chronic pain patients brains light up the amygdala which is responsible for emotions like anger and rage\u0027, \"there\u0027s really no very little relationship between structural changes and the pain that you\u0027re experiencing\"])]\n\u003c/text\u003e\n\nFirst, make a short list of notes on the codes we want to keep. Avoid duplicates. Just list the names of the codes we will keep.\n\n--\n\nCodes to keep for final CodeList:\n- Persistent fatigue and energy drain on standing\n- Overexertion leading to relapse and worsening symptoms\n- Relentless pushing through fatigue despite physical limits\n- Realization and acceptance of necessary lifestyle changes\n- Embracing brain retraining as a key to recovery\n- Learning to set boundaries to manage energy and avoid overcommitment\n- Difficulty with relaxation and understanding true rest\n- Frustration and occasional anger toward others\u2019 misunderstanding of illness\n- Maintaining hope and positivity despite chronic illness challenges\n- Developing self-awareness to avoid overexertion and manage symptoms\n- Focusing on holistic recovery instead of individual symptoms\n- Desire for symptom comparison but finding it unhelpful\n- Using symptom management mainly for comfort rather than recovery\n- Need to tailor recovery plans individually to each person\u0027s lifestyle and journey\n- Frustration and disappointment from focusing on symptom-specific fixes\n- Setting emotional boundaries around discussing past symptoms\n- Walking miracle gratitude for life after chronic illness\n- Difficulty relating to healthy friends post illness\n- Frustration with delayed diagnosis and misdiagnosis\n- Self advocacy and research to access better healthcare\n- Discovery and treatment of genetic mitochondrial disease\n- Drastic lifestyle changes including diet and environment for recovery\n- Overcoming intense sugar addiction to support healing\n- Movement therapy as gentle rehabilitation rather than exercise\n- Psychological impact and personal growth from chronic illness experience\n- Fear and anxiety about pregnancy symptoms being illness relapse\n- Hope and positivity through seeing others recover from chronic illness\n- Self empowerment through knowledge acquisition and faith in recovery\n- Scary and confusing early illness experience\n- Feeling isolated due to illness\n- Rejection of depression diagnosis and emotional awareness\n- Hope from meditation and yoga practices\n- Desperation leads to trying various alternative therapies\n- Realization of suppressed anger and unresolved trauma\n- Mind-body connection and trauma understanding\n- Learning authentic self-expression and setting boundaries\n- Spiritual experience as part of healing journey\n- Ongoing self-care and regulation post recovery\n- Career shift driven by healing experience\n- Recognizing familial and ancestral trauma impact on health\n- Trauma leading to sudden health crisis and exhaustion\n- Fear and uncertainty following chronic fatigue syndrome diagnosis\n- Resentment towards restrictive diets imposed in treatment\n- Regaining personal agency and control in healing journey\n- Experiencing mental peace while symptoms persist\n- Adopting brain and nervous system explanation for ME/CFS symptoms\n- Cultivating self-compassion to manage symptoms and aid recovery\n- Role of personality traits like perfectionism in illness experience\n- Acknowledging and processing emotions as key to recovery\n- Finding validation and hope through empathetic connection\n- Energy loss and fatigue reducing daily activity\n- Frustration from inconclusive medical investigations\n- Initial skepticism towards brain retraining techniques\n- Importance of mental stamina for physical activity recovery\n- Valuing supportive and personal encouragement during recovery\n- Developing empowering self-statements to combat anxiety\n- Recognizing recovery as a journey, not a fixed state\n- Feeling frustrated and isolated due to long COVID limitations\n- Desire for understanding and validation from others\n- Need to regain physical energy and return to normal function\n- Search for effective treatment and cures for symptom relief\n- Coping with changes to identity and sense of self\n- Anger as fight or flight physiology driving chronic pain\n- Chronic pain as embedded memory in neuroplastic pain circuits\n- Unconscious brain drives survival responses and chronic symptoms\n- Letting go of fighting pain as crucial to healing process\n- Threat physiology underlies chronic mental and physical symptoms\n- Separating oneself from negative and repetitive thoughts\n- Nurturing joy as a vital part of healing journey\n- Importance of sleep diet and exercise for calming nervous system\n- Physiology\u0027s dominance over conscious brain in symptom experience\n- Using skepticism as a starting point to engage in healing\n- Book as key to chronic pain recovery approach\n- Emotion-focused therapy as core to pain recovery process\n- Barriers to engaging with emotion-focused therapy include fear and trust issues\n- Growing acceptance of emotion-focused therapy among medical professionals\n- Mindset shift required for accepting therapy as part of recovery\n- Understanding emotions as the source of physical pain\n\n--\n\nNow, form this list of new/aligned codes into the required format.\n\nA code consists of\n\n- A concise name (8-15 words)\n- A codename/slug (max 20 letters a-Z)\n- A meaningful description (around 50 words)\n- Representative quotes from the text (abbreviated with ellipses if needed)\nAlways use the tools/JSON response.\n\n```json"
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"arguments": "{\"themes\":[{\"name\":\"experiencing relentless fatigue and energy crashes leading to debilitating daily function loss\",\"description\":\"Participants describe severe exhaustion triggered by minimal physical activity, such as standing, causing complete energy depletion that leads to prolonged bed rest and inability to perform basic tasks. This relentless fatigue often worsens through overexertion, causing relapses that significantly disrupt their day-to-day functioning and independence.\",\"code_slugs\":[\"persistent-fatigue-energy\",\"overexertion-relapse-cycle\",\"pushing-through-fatigue\"]},{\"name\":\"struggling with chronic illness limits while maintaining hope and adjusting lifestyle\",\"description\":\"Participants experience tension between initially denying their condition and accepting the need for significant lifestyle changes. They emphasize maintaining positive, hopeful mindsets and learning to set personal boundaries to manage energy, avoid overcommitment, and prevent relapse while gradually adapting to the chronic illness realities.\",\"code_slugs\":[\"acceptance-lifestyle-changes\",\"hope-positivity-chronic-illness\",\"self-awareness-overexertion\",\"setting-boundaries-energy\"]},{\"name\":\"embracing brain retraining and nervous system calming for symptom control and recovery\",\"description\":\"Skepticism shifts to trust in brain retraining programs that address fight or flight responses embedded in the nervous system, enabling participants to gain control, reduce anxiety, and observe improvements. These approaches are embraced as fundamental parts of recovery, complementing emotional regulation and nervous system calming strategies.\",\"code_slugs\":[\"brain-retraining-recovery\",\"brain-nervous-sys-fatigue\",\"skepticism-brain-retraining\",\"skepticism-starting-point-healing\"]},{\"name\":\"difficulties with genuine rest and relaxation practices essential for recovery\",\"description\":\"Participants struggle to implement real rest and authentic relaxation, such as meditation or naps, finding it challenging to override ingrained habits and mental resistance. Learning to genuinely relax is necessary and transformative but remains a persistent challenge in managing ongoing fatigue and symptoms.\",\"code_slugs\":[\"difficulty-relaxing-rest\"]},{\"name\":\"emotional struggle from social misunderstandings requiring boundaries to protect well-being\",\"description\":\"Frustrations arise from others\u2019 misunderstanding and minimizing of their illness, often triggering anger and emotional distress. Participants describe the necessity of setting emotional boundaries around discussing symptoms and managing social interactions to protect mental health and maintain recovery progress.\",\"code_slugs\":[\"anger-misunderstanding-others\",\"emotional-boundaries-symptoms\"]},{\"name\":\"valuing holistic recovery over symptom-specific treatments to foster comprehensive healing\",\"description\":\"Participants highlight that focusing exclusively on symptom management offers only temporary relief. Embracing a holistic approach supporting the entire body leads to more meaningful recovery. Symptom-specific fixes are often frustrating and disillusioning, emphasizing the need for integrated, personalized recovery strategies.\",\"code_slugs\":[\"holistic-recovery-focus\",\"symptom-management-palliation\",\"frustration-symptom-fix\"]},{\"name\":\"recognizing the need for personalized recovery plans tailored to unique illness journeys\",\"description\":\"Recovery must be individually customized considering unique symptoms, lifestyles, and wellness paths. Participants stress that pacing, treatments, and strategies must be flexible and personally relevant to empower their healing journey effectively, avoiding generic or one-size-fits-all approaches.\",\"code_slugs\":[\"personalized-recovery-plans\"]},{\"name\":\"deep gratitude for renewed life and profound relationship changes after illness recovery\",\"description\":\"Experiencing recovery, participants express overwhelming gratitude and awe, describing feelings like a \u201cwalking miracle.\u201d They reflect joy and appreciation for daily life and relationships while acknowledging challenges in reconnecting with healthy peers and adjusting social dynamics post-illness.\",\"code_slugs\":[\"walking-miracle-gratitude\",\"difficulty-relating-healthy\"]},{\"name\":\"challenge and resilience through medical misdiagnosis prompting strong self-advocacy\",\"description\":\"Frustration from delayed or incorrect diagnoses leads participants to take active roles in their healthcare by researching providers, seeking knowledgeable specialists, and discovering underlying conditions. This self-advocacy is crucial to accessing effective treatments and regaining control over their health.\",\"code_slugs\":[\"diagnosis-delay-misdiagnosis\",\"self-advocacy-healthcare\",\"genetic-mitochondrial-treatment\"]},{\"name\":\"undertaking drastic lifestyle changes including diet, movement, and toxin avoidance for healing\",\"description\":\"Participants commit to significant life alterations, such as elimination diets, gentle movement therapy, and reducing environmental toxins. Overcoming challenges like sugar addiction, they carefully pace their rehabilitation to support inflammation reduction and sustainable recovery.\",\"code_slugs\":[\"drastic-lifestyle-changes\",\"overcoming-sugar-addiction\",\"movement-therapy-gentle-rehab\"]},{\"name\":\"transforming through psychological growth, spiritual awakening, and enhanced self-expression\",\"description\":\"The chronic illness journey fosters deep psychological and spiritual transformation. Participants gain humility, acceptance, and a renewed sense of self, employing authentic communication and boundary-setting skills. Spiritual experiences sometimes challenge daily life but contribute significantly to healing and personal development.\",\"code_slugs\":[\"psychological-growth-illness\",\"spiritual-experience-healing\",\"authentic-self-expression\",\"self-empowerment-knowledge-faith\"]},{\"name\":\"managing anxiety related to pregnancy symptoms with self-compassion and cautious optimism\",\"description\":\"Participants face fear and anxious uncertainty interpreting pregnancy symptoms through the lens of past illness. They learn to differentiate normal pregnancy experiences from relapse signs, cultivating self-kindness and cautious hope to navigate this emotional terrain safely.\",\"code_slugs\":[\"pregnancy-anxiety-relapse\"]},{\"name\":\"inspired hope and community support from witnessing others\u0027 recoveries\",\"description\":\"Seeing others improve and connect with supportive communities provides vital hope to participants, reducing loneliness and sustaining motivation. Shared experiences validate their journey, fostering perseverance and faith in eventual improvements despite chronic challenges.\",\"code_slugs\":[\"hope-positivity-others-recover\",\"validation-hope-connection\"]},{\"name\":\"early illness shock and isolation amidst misunderstood symptoms and lack of diagnosis\",\"description\":\"Participants recount a frightening onset of chronic fatigue characterized by confusion, isolation from friends and usual environments, and emotional distress. Misdiagnoses and being dismissed as depressed amplify feelings of misunderstanding and loneliness during critical early stages.\",\"code_slugs\":[\"scary-confusing-early-illness\",\"feeling-isolated-illness\",\"reject-depression-diagnosis\"]},{\"name\":\"desperation fuels trial of varied alternative therapies seeking relief and recovery\",\"description\":\"Driven by urgency and hope, participants experiment with multiple complementary therapies including acupuncture, reiki, nutrition, and colon hydrotherapy. Though outcomes vary, this exploration reflects a willingness to try diverse methods amid limited conventional options.\",\"code_slugs\":[\"desperation-trying-therapies\"]},{\"name\":\"unlocking healing by addressing suppressed anger, trauma, and mind-body connections\",\"description\":\"Recognition and processing of unresolved anger, trauma, and stress patterns emerge as central to recovery. Participants link physical symptoms to emotional blocks and trauma manifestations, employing mind-body frameworks to facilitate breakthroughs and alleviate symptom severity.\",\"code_slugs\":[\"suppressed-anger-trauma\",\"mindbody-trauma-understanding\"]},{\"name\":\"engaging in emotion-focused therapy to safely process difficult emotions underlying pain\",\"description\":\"Participants engage in intensive therapeutic approaches such as ISTDP to access and work through suppressed emotions like anger and rage. Despite fears and trust barriers, gradually confronting these feelings reveals their role in physical pain and supports emotional and physical healing.\",\"code_slugs\":[\"emotion-focused-pain-therapy\",\"therapy-engagement-barriers\",\"emotions-source-physical-pain\"]},{\"name\":\"gaining validation and hope from medical acceptance and evolving pain recovery treatments\",\"description\":\"Increasing recognition of emotion-focused therapy within medical communities provides participants with critical validation and optimism. Growing professional acceptance and scientific support enhance trust in therapies targeting emotional causes of chronic pain, positively influencing recovery experiences.\",\"code_slugs\":[\"professional-acceptance-therapy\"]},{\"name\":\"adapting mindset to accept therapy as an integral part of chronic illness recovery\",\"description\":\"Participants describe a challenging but vital mental shift from viewing therapy as coping to embracing it as essential for true recovery. This shift bridges perceived divides between mental and physical health, fostering commitment to holistic healing beyond symptom management.\",\"code_slugs\":[\"mindset-shift-therapy-acceptance\"]},{\"name\":\"living with chronic symptoms involves acceptance and developing tools to manage setbacks\",\"description\":\"Participants acknowledge that recovery is an ongoing journey requiring acceptance of fluctuating symptoms. They rely on coping strategies, empowering self-statements, and supportive encouragement to maintain progress, regain confidence, and face challenges without fear or frustration.\",\"code_slugs\":[\"recovery-is-journey\",\"mental-stamina-recovery\",\"empowering-self-statements\",\"supportive-encouragement\"]},{\"name\":\"experiencing isolation and frustration from long COVID and desire for empathy and validation\",\"description\":\"Long COVID participants report persistent fatigue limiting activities, leading to isolation and emotional distress. A strong desire for empathetic recognition and validation from others underscores their need for acknowledgment of their struggles and supports to mitigate stigma and loneliness.\",\"code_slugs\":[\"long-covid-frustration-isolation\",\"desire-understanding-validation\"]},{\"name\":\"yearning to regain physical energy and normal functioning to reclaim identity\",\"description\":\"Participants express deep longing to restore lost energy and perform daily activities without exhaustion. This desire is connected to coping with identity shifts caused by chronic illness, reflecting a struggle to accept new limitations and reclaim a sense of self.\",\"code_slugs\":[\"regain-physical-energy\",\"coping-identity-changes\"]},{\"name\":\"struggling with medical uncertainty and frustration over normal test results despite symptoms\",\"description\":\"Participants experience doubt and confusion when extensive medical tests show normal results despite debilitating symptoms. This leads to questioning the nature of their illness and considering mental health explanations, highlighting challenges in diagnosis and validation.\",\"code_slugs\":[\"frustration-medical-tests\",\"energy-loss-fatigue\"]},{\"name\":\"understanding chronic pain as a brain-embedded survival response requiring acceptance\",\"description\":\"Pain is perceived as a persistent neural memory embedded in the brain\u0027s pain circuits. Participants find that fighting pain reinforces it, while acceptance and separation from pain facilitate creating new neural pathways, enabling life despite chronic symptoms driven by autonomic threat responses.\",\"code_slugs\":[\"pain-memory-neuroplasticity\",\"anger-fight-flight\",\"letting-go-fighting-pain\",\"threat-physiology-chronic-symptoms\",\"physiology-over-consciousness\",\"unconscious-brain-survival\"]},{\"name\":\"breaking free from negative thought cycles to reduce pain and emotional distress\",\"description\":\"Participants describe battling negative repetitive thoughts that aggravate anxiety and symptoms. Learning to separate self-identity from these intrusive thoughts through behavioral and expressive therapies reduces distress and supports healing by calming physiological arousal.\",\"code_slugs\":[\"separating-negative-thoughts\"]},{\"name\":\"cultivating joy, safety, and health habits to counteract chronic stress and support healing\",\"description\":\"Joyful experiences, positive relationships, and lifestyle factors like sleep, diet, and exercise foster nervous system calm and create conditions conducive to healing. Participants emphasize balancing physiological safety and nurturance to overcome chronic illness and thrive despite past pain and stress.\",\"code_slugs\":[\"nurturing-joy-healing\",\"sleep-diet-exercise-nervous-system\"]},{\"name\":\"discovering hope and new perspectives through transformational recovery literature\",\"description\":\"Key books such as Dr. John Sarno\u0027s work resonate deeply with participants, offering explanation, hope, and practical recovery approaches. These writings introduce mind-body concepts that inspire therapeutic career paths and provide foundational knowledge supporting recovery.\",\"code_slugs\":[\"book-key-pain-recovery\"]}]}",
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"themes": [
{
"code_slugs": [
"persistent-fatigue-energy",
"overexertion-relapse-cycle",
"pushing-through-fatigue"
],
"description": "Participants describe severe exhaustion triggered by minimal physical activity, such as standing, causing complete energy depletion that leads to prolonged bed rest and inability to perform basic tasks. This relentless fatigue often worsens through overexertion, causing relapses that significantly disrupt their day-to-day functioning and independence.",
"name": "experiencing relentless fatigue and energy crashes leading to debilitating daily function loss"
},
{
"code_slugs": [
"acceptance-lifestyle-changes",
"hope-positivity-chronic-illness",
"self-awareness-overexertion",
"setting-boundaries-energy"
],
"description": "Participants experience tension between initially denying their condition and accepting the need for significant lifestyle changes. They emphasize maintaining positive, hopeful mindsets and learning to set personal boundaries to manage energy, avoid overcommitment, and prevent relapse while gradually adapting to the chronic illness realities.",
"name": "struggling with chronic illness limits while maintaining hope and adjusting lifestyle"
},
{
"code_slugs": [
"brain-retraining-recovery",
"brain-nervous-sys-fatigue",
"skepticism-brain-retraining",
"skepticism-starting-point-healing"
],
"description": "Skepticism shifts to trust in brain retraining programs that address fight or flight responses embedded in the nervous system, enabling participants to gain control, reduce anxiety, and observe improvements. These approaches are embraced as fundamental parts of recovery, complementing emotional regulation and nervous system calming strategies.",
"name": "embracing brain retraining and nervous system calming for symptom control and recovery"
},
{
"code_slugs": [
"difficulty-relaxing-rest"
],
"description": "Participants struggle to implement real rest and authentic relaxation, such as meditation or naps, finding it challenging to override ingrained habits and mental resistance. Learning to genuinely relax is necessary and transformative but remains a persistent challenge in managing ongoing fatigue and symptoms.",
"name": "difficulties with genuine rest and relaxation practices essential for recovery"
},
{
"code_slugs": [
"anger-misunderstanding-others",
"emotional-boundaries-symptoms"
],
"description": "Frustrations arise from others\u2019 misunderstanding and minimizing of their illness, often triggering anger and emotional distress. Participants describe the necessity of setting emotional boundaries around discussing symptoms and managing social interactions to protect mental health and maintain recovery progress.",
"name": "emotional struggle from social misunderstandings requiring boundaries to protect well-being"
},
{
"code_slugs": [
"holistic-recovery-focus",
"symptom-management-palliation",
"frustration-symptom-fix"
],
"description": "Participants highlight that focusing exclusively on symptom management offers only temporary relief. Embracing a holistic approach supporting the entire body leads to more meaningful recovery. Symptom-specific fixes are often frustrating and disillusioning, emphasizing the need for integrated, personalized recovery strategies.",
"name": "valuing holistic recovery over symptom-specific treatments to foster comprehensive healing"
},
{
"code_slugs": [
"personalized-recovery-plans"
],
"description": "Recovery must be individually customized considering unique symptoms, lifestyles, and wellness paths. Participants stress that pacing, treatments, and strategies must be flexible and personally relevant to empower their healing journey effectively, avoiding generic or one-size-fits-all approaches.",
"name": "recognizing the need for personalized recovery plans tailored to unique illness journeys"
},
{
"code_slugs": [
"walking-miracle-gratitude",
"difficulty-relating-healthy"
],
"description": "Experiencing recovery, participants express overwhelming gratitude and awe, describing feelings like a \u201cwalking miracle.\u201d They reflect joy and appreciation for daily life and relationships while acknowledging challenges in reconnecting with healthy peers and adjusting social dynamics post-illness.",
"name": "deep gratitude for renewed life and profound relationship changes after illness recovery"
},
{
"code_slugs": [
"diagnosis-delay-misdiagnosis",
"self-advocacy-healthcare",
"genetic-mitochondrial-treatment"
],
"description": "Frustration from delayed or incorrect diagnoses leads participants to take active roles in their healthcare by researching providers, seeking knowledgeable specialists, and discovering underlying conditions. This self-advocacy is crucial to accessing effective treatments and regaining control over their health.",
"name": "challenge and resilience through medical misdiagnosis prompting strong self-advocacy"
},
{
"code_slugs": [
"drastic-lifestyle-changes",
"overcoming-sugar-addiction",
"movement-therapy-gentle-rehab"
],
"description": "Participants commit to significant life alterations, such as elimination diets, gentle movement therapy, and reducing environmental toxins. Overcoming challenges like sugar addiction, they carefully pace their rehabilitation to support inflammation reduction and sustainable recovery.",
"name": "undertaking drastic lifestyle changes including diet, movement, and toxin avoidance for healing"
},
{
"code_slugs": [
"psychological-growth-illness",
"spiritual-experience-healing",
"authentic-self-expression",
"self-empowerment-knowledge-faith"
],
"description": "The chronic illness journey fosters deep psychological and spiritual transformation. Participants gain humility, acceptance, and a renewed sense of self, employing authentic communication and boundary-setting skills. Spiritual experiences sometimes challenge daily life but contribute significantly to healing and personal development.",
"name": "transforming through psychological growth, spiritual awakening, and enhanced self-expression"
},
{
"code_slugs": [
"pregnancy-anxiety-relapse"
],
"description": "Participants face fear and anxious uncertainty interpreting pregnancy symptoms through the lens of past illness. They learn to differentiate normal pregnancy experiences from relapse signs, cultivating self-kindness and cautious hope to navigate this emotional terrain safely.",
"name": "managing anxiety related to pregnancy symptoms with self-compassion and cautious optimism"
},
{
"code_slugs": [
"hope-positivity-others-recover",
"validation-hope-connection"
],
"description": "Seeing others improve and connect with supportive communities provides vital hope to participants, reducing loneliness and sustaining motivation. Shared experiences validate their journey, fostering perseverance and faith in eventual improvements despite chronic challenges.",
"name": "inspired hope and community support from witnessing others\u0027 recoveries"
},
{
"code_slugs": [
"scary-confusing-early-illness",
"feeling-isolated-illness",
"reject-depression-diagnosis"
],
"description": "Participants recount a frightening onset of chronic fatigue characterized by confusion, isolation from friends and usual environments, and emotional distress. Misdiagnoses and being dismissed as depressed amplify feelings of misunderstanding and loneliness during critical early stages.",
"name": "early illness shock and isolation amidst misunderstood symptoms and lack of diagnosis"
},
{
"code_slugs": [
"desperation-trying-therapies"
],
"description": "Driven by urgency and hope, participants experiment with multiple complementary therapies including acupuncture, reiki, nutrition, and colon hydrotherapy. Though outcomes vary, this exploration reflects a willingness to try diverse methods amid limited conventional options.",
"name": "desperation fuels trial of varied alternative therapies seeking relief and recovery"
},
{
"code_slugs": [
"suppressed-anger-trauma",
"mindbody-trauma-understanding"
],
"description": "Recognition and processing of unresolved anger, trauma, and stress patterns emerge as central to recovery. Participants link physical symptoms to emotional blocks and trauma manifestations, employing mind-body frameworks to facilitate breakthroughs and alleviate symptom severity.",
"name": "unlocking healing by addressing suppressed anger, trauma, and mind-body connections"
},
{
"code_slugs": [
"emotion-focused-pain-therapy",
"therapy-engagement-barriers",
"emotions-source-physical-pain"
],
"description": "Participants engage in intensive therapeutic approaches such as ISTDP to access and work through suppressed emotions like anger and rage. Despite fears and trust barriers, gradually confronting these feelings reveals their role in physical pain and supports emotional and physical healing.",
"name": "engaging in emotion-focused therapy to safely process difficult emotions underlying pain"
},
{
"code_slugs": [
"professional-acceptance-therapy"
],
"description": "Increasing recognition of emotion-focused therapy within medical communities provides participants with critical validation and optimism. Growing professional acceptance and scientific support enhance trust in therapies targeting emotional causes of chronic pain, positively influencing recovery experiences.",
"name": "gaining validation and hope from medical acceptance and evolving pain recovery treatments"
},
{
"code_slugs": [
"mindset-shift-therapy-acceptance"
],
"description": "Participants describe a challenging but vital mental shift from viewing therapy as coping to embracing it as essential for true recovery. This shift bridges perceived divides between mental and physical health, fostering commitment to holistic healing beyond symptom management.",
"name": "adapting mindset to accept therapy as an integral part of chronic illness recovery"
},
{
"code_slugs": [
"recovery-is-journey",
"mental-stamina-recovery",
"empowering-self-statements",
"supportive-encouragement"
],
"description": "Participants acknowledge that recovery is an ongoing journey requiring acceptance of fluctuating symptoms. They rely on coping strategies, empowering self-statements, and supportive encouragement to maintain progress, regain confidence, and face challenges without fear or frustration.",
"name": "living with chronic symptoms involves acceptance and developing tools to manage setbacks"
},
{
"code_slugs": [
"long-covid-frustration-isolation",
"desire-understanding-validation"
],
"description": "Long COVID participants report persistent fatigue limiting activities, leading to isolation and emotional distress. A strong desire for empathetic recognition and validation from others underscores their need for acknowledgment of their struggles and supports to mitigate stigma and loneliness.",
"name": "experiencing isolation and frustration from long COVID and desire for empathy and validation"
},
{
"code_slugs": [
"regain-physical-energy",
"coping-identity-changes"
],
"description": "Participants express deep longing to restore lost energy and perform daily activities without exhaustion. This desire is connected to coping with identity shifts caused by chronic illness, reflecting a struggle to accept new limitations and reclaim a sense of self.",
"name": "yearning to regain physical energy and normal functioning to reclaim identity"
},
{
"code_slugs": [
"frustration-medical-tests",
"energy-loss-fatigue"
],
"description": "Participants experience doubt and confusion when extensive medical tests show normal results despite debilitating symptoms. This leads to questioning the nature of their illness and considering mental health explanations, highlighting challenges in diagnosis and validation.",
"name": "struggling with medical uncertainty and frustration over normal test results despite symptoms"
},
{
"code_slugs": [
"pain-memory-neuroplasticity",
"anger-fight-flight",
"letting-go-fighting-pain",
"threat-physiology-chronic-symptoms",
"physiology-over-consciousness",
"unconscious-brain-survival"
],
"description": "Pain is perceived as a persistent neural memory embedded in the brain\u0027s pain circuits. Participants find that fighting pain reinforces it, while acceptance and separation from pain facilitate creating new neural pathways, enabling life despite chronic symptoms driven by autonomic threat responses.",
"name": "understanding chronic pain as a brain-embedded survival response requiring acceptance"
},
{
"code_slugs": [
"separating-negative-thoughts"
],
"description": "Participants describe battling negative repetitive thoughts that aggravate anxiety and symptoms. Learning to separate self-identity from these intrusive thoughts through behavioral and expressive therapies reduces distress and supports healing by calming physiological arousal.",
"name": "breaking free from negative thought cycles to reduce pain and emotional distress"
},
{
"code_slugs": [
"nurturing-joy-healing",
"sleep-diet-exercise-nervous-system"
],
"description": "Joyful experiences, positive relationships, and lifestyle factors like sleep, diet, and exercise foster nervous system calm and create conditions conducive to healing. Participants emphasize balancing physiological safety and nurturance to overcome chronic illness and thrive despite past pain and stress.",
"name": "cultivating joy, safety, and health habits to counteract chronic stress and support healing"
},
{
"code_slugs": [
"book-key-pain-recovery"
],
"description": "Key books such as Dr. John Sarno\u0027s work resonate deeply with participants, offering explanation, hope, and practical recovery approaches. These writings introduce mind-body concepts that inspire therapeutic career paths and provide foundational knowledge supporting recovery.",
"name": "discovering hope and new perspectives through transformational recovery literature"
}
]
},
"prompt": "You are a: Experienced qual researcher\n\nNone\n\nYou are at the final theme generation stage. You are provided preliminary themes, with their descriptions and relevant codes.\n\nThese preliminary themes and codes are generated from interview transcripts with participants who took part in the study.\n\nA \u0027theme\u0027 relates to the experience of participants.\n\nThemes pertain to participants. Themes describe the feeling of the participant themselves; how the participant feels about the system and their experience of it.\n\nReview and consolidate the following preliminary themes into major themes.\n\nEach major theme should be distinct from the others.\n\nThe major themes will be used to write the final report.\n\nA code can appear in multiple major themes if relevant.\nList all the relevant codes under each major theme.\n\nUse personal and domain-specific language and avoid generalized terms to generate names and descriptions of the final themes.\n\nWrite with concise, concrete details and avoid clich\u00e9s and generalizations. Avoid the word \u0027Navigating\u0027 in the names.\n\nTry to use the language the participants use when generating the names and descriptions. Directly use the language from the quotes and descriptions.\n\nWrite the final theme name in sentence case.\n\nThe name of the theme should consist of 8 to 15 words.\n\nEach final theme should have a description of 60 to 80 words and list all relevant codes.\n\nAct like an Inductive Thematic Analysis researcher would when conducting this Inductive Thematic Analysis for generating the name and descriptions of the themes.\n\nThe name of the themes are the desires, needs, and most meaningful outcomes for participants. You will be rewarded if you can complete this effectively.\n\nReview and consolidate the following preliminary themes into ~7 (+/- 2) overarching major themes. Use fewer themes if there is too much overlap.\n\nComplete list of codes identified:\n\ncodenotes: Codes to keep for final CodeList:\n- Persistent fatigue and energy drain on standing\n- Overexertion leading to relapse and worsening symptoms\n- Relentless pushing through fatigue despite physical limits\n- Realization and acceptance of necessary lifestyle changes\n- Embracing brain retraining as a key to recovery\n- Learning to set boundaries to manage energy and avoid overcommitment\n- Difficulty with relaxation and understanding true rest\n- Frustration and occasional anger toward others\u2019 misunderstanding of illness\n- Maintaining hope and positivity despite chronic illness challenges\n- Developing self-awareness to avoid overexertion and manage symptoms\n- Focusing on holistic recovery instead of individual symptoms\n- Desire for symptom comparison but finding it unhelpful\n- Using symptom management mainly for comfort rather than recovery\n- Need to tailor recovery plans individually to each person\u0027s lifestyle and journey\n- Frustration and disappointment from focusing on symptom-specific fixes\n- Setting emotional boundaries around discussing past symptoms\n- Walking miracle gratitude for life after chronic illness\n- Difficulty relating to healthy friends post illness\n- Frustration with delayed diagnosis and misdiagnosis\n- Self advocacy and research to access better healthcare\n- Discovery and treatment of genetic mitochondrial disease\n- Drastic lifestyle changes including diet and environment for recovery\n- Overcoming intense sugar addiction to support healing\n- Movement therapy as gentle rehabilitation rather than exercise\n- Psychological impact and personal growth from chronic illness experience\n- Fear and anxiety about pregnancy symptoms being illness relapse\n- Hope and positivity through seeing others recover from chronic illness\n- Self empowerment through knowledge acquisition and faith in recovery\n- Scary and confusing early illness experience\n- Feeling isolated due to illness\n- Rejection of depression diagnosis and emotional awareness\n- Hope from meditation and yoga practices\n- Desperation leads to trying various alternative therapies\n- Realization of suppressed anger and unresolved trauma\n- Mind-body connection and trauma understanding\n- Learning authentic self-expression and setting boundaries\n- Spiritual experience as part of healing journey\n- Ongoing self-care and regulation post recovery\n- Career shift driven by healing experience\n- Recognizing familial and ancestral trauma impact on health\n- Trauma leading to sudden health crisis and exhaustion\n- Fear and uncertainty following chronic fatigue syndrome diagnosis\n- Resentment towards restrictive diets imposed in treatment\n- Regaining personal agency and control in healing journey\n- Experiencing mental peace while symptoms persist\n- Adopting brain and nervous system explanation for ME/CFS symptoms\n- Cultivating self-compassion to manage symptoms and aid recovery\n- Role of personality traits like perfectionism in illness experience\n- Acknowledging and processing emotions as key to recovery\n- Finding validation and hope through empathetic connection\n- Energy loss and fatigue reducing daily activity\n- Frustration from inconclusive medical investigations\n- Initial skepticism towards brain retraining techniques\n- Importance of mental stamina for physical activity recovery\n- Valuing supportive and personal encouragement during recovery\n- Developing empowering self-statements to combat anxiety\n- Recognizing recovery as a journey, not a fixed state\n- Feeling frustrated and isolated due to long COVID limitations\n- Desire for understanding and validation from others\n- Need to regain physical energy and return to normal function\n- Search for effective treatment and cures for symptom relief\n- Coping with changes to identity and sense of self\n- Anger as fight or flight physiology driving chronic pain\n- Chronic pain as embedded memory in neuroplastic pain circuits\n- Unconscious brain drives survival responses and chronic symptoms\n- Letting go of fighting pain as crucial to healing process\n- Threat physiology underlies chronic mental and physical symptoms\n- Separating oneself from negative and repetitive thoughts\n- Nurturing joy as a vital part of healing journey\n- Importance of sleep diet and exercise for calming nervous system\n- Physiology\u0027s dominance over conscious brain in symptom experience\n- Using skepticism as a starting point to engage in healing\n- Book as key to chronic pain recovery approach\n- Emotion-focused therapy as core to pain recovery process\n- Barriers to engaging with emotion-focused therapy include fear and trust issues\n- Growing acceptance of emotion-focused therapy among medical professionals\n- Mindset shift required for accepting therapy as part of recovery\n- Understanding emotions as the source of physical pain\n\ncodes: codes=[Code(slug=\u0027persistent-fatigue-energy\u0027, name=\u0027Persistent fatigue and energy drain on standing\u0027, description=\u0027Participant describes extreme exhaustion and complete energy drain when standing after lying down, causing prolonged bedbound state and lasting impact on daily functioning.\u0027, quotes=[\"\u0027...the minute i stood up i just couldn\u0027t do anything i just drained of energy completely\u0027\", \"\u0027...always tired constantly tired\u0027\"]), Code(slug=\u0027overexertion-relapse-cycle\u0027, name=\u0027Overexertion leading to relapse and worsening symptoms\u0027, description=\u0027Participant explains the cycle of pushing beyond limits, subsequent virus contraction, and severe relapse, resulting in retirement and major activity limitations.\u0027, quotes=[\"\u0027...walking like ten miles every day ... i picked up a couple of viruses ... can\u0027t get out of bed\u0027\", \"\u0027...had to retire at that stage ... kept pushing myself\u0027\"]), Code(slug=\u0027pushing-through-fatigue\u0027, name=\u0027Relentless pushing through fatigue despite physical limits\u0027, description=\u0027Despite exhaustion and inability to perform simple tasks, participant continually pushed themselves to walk and exercise daily, worsening energy depletion.\u0027, quotes=[\"\u0027i wouldn\u0027t let myself not go ... i\u0027d wake up at five o\u0027clock ... just went walking\u0027\", \"\u0027then i couldn\u0027t do anything for myself ... had to lie down because no energy to cook\u0027\"]), Code(slug=\u0027acceptance-lifestyle-changes\u0027, name=\u0027Realization and acceptance of necessary lifestyle changes\u0027, description=\u0027Participant initially in denial later recognized the need for significant lifestyle changes to manage illness instead of hoping to return to previous activity levels.\u0027, quotes=[\"\u0027...i am going to have to make life changes ... my life is going to have to change\u0027\", \"\u0027part of it was just ignorance be part of it\u0027\"]), Code(slug=\u0027brain-retraining-recovery\u0027, name=\u0027Embracing brain retraining as a key to recovery\u0027, description=\"Skepticism about brain retraining shifted to acceptance after learning it addresses protective responses and mental \u0027fight or flight\u0027 state, leading to program participation and positive results.\", quotes=[\"\u0027...when he explaining ... your body has switched down some of the genes ... fight too much ... made sense\u0027\", \"\u0027...contacted jason and went onto his program because it actually really made sense\u0027\"]), Code(slug=\u0027setting-boundaries-energy\u0027, name=\u0027Learning to set boundaries to manage energy and avoid overcommitment\u0027, description=\u0027Participant emphasizes importance of personal boundaries like letting calls go to voicemail to prevent energy drain and managing social demands by self-monitoring exhaustion.\u0027, quotes=[\"\u0027if my phone rings i let it go to voicemail so i can deal with it when i want to\u0027\", \"\u0027learning boundaries the hardest for me was learning boundaries\u0027\"]), Code(slug=\u0027difficulty-relaxing-rest\u0027, name=\u0027Difficulty with relaxation and understanding true rest\u0027, description=\"Participant struggles with relaxation practices like meditation and needs to relearn the concept and practice of \u0027real rest\u0027 familiar to healthy individuals but hard for her to implement.\", quotes=[\"\u0027...i\u0027m not good at relaxing ... people say do meditation ... i just struggled with it\u0027\", \"\u0027...now i make myself every day lay down and take a nap or do some meditation\u0027\"]), Code(slug=\u0027anger-misunderstanding-others\u0027, name=\u0027Frustration and occasional anger toward others\u2019 misunderstanding of illness\u0027, description=\u0027Participant feels annoyance and flares when others minimize or misunderstand her illness or recovery, particularly those who never had the illness or pass unfair judgment, showing emotional toll of misunderstanding.\u0027, quotes=[\"\u0027when people say silly things sometimes ... i can flare up\u0027\", \"\u0027...when somebody minimizes it you can think no\u0027\"]), Code(slug=\u0027hope-positivity-chronic-illness\u0027, name=\u0027Maintaining hope and positivity despite chronic illness challenges\u0027, description=\u0027Participant\u2019s positive and obstinate personality is key to refusing acceptance of permanent disability and sustaining belief in recovery and improvement despite long-term severe illness.\u0027, quotes=[\"\u0027...i\u0027m just a very positive person ... also obstinate\u0027\", \"\u0027never ever felt ... i was almost like in denial\u0027\"]), Code(slug=\u0027self-awareness-overexertion\u0027, name=\u0027Developing self-awareness to avoid overexertion and manage symptoms\u0027, description=\u0027Participant stresses importance of listening to body, recognizing triggers, and adjusting activities timely to prevent relapse and maintain health improvements.\u0027, quotes=[\"\u0027...i\u0027ve learnt to listen to myself listen to my body ... work out what my triggers are\u0027\", \"\u0027i can stop myself before i actually get to the stage where i\u0027m really pushing boundaries\u0027\"]), Code(slug=\u0027holistic-recovery-focus\u0027, name=\u0027Focusing on holistic recovery instead of individual symptoms\u0027, description=\u0027Participants emphasize prioritizing overall body support and holistic healing in managing ME/CFS rather than treating isolated symptoms, which was overwhelming and ineffective, whereas holistic approach contributed to gradual recovery.\u0027, quotes=[\"\u0027...recovery ended up being not about focusing on symptoms but on supporting my body as a whole...\u0027\", \"\u0027...as i slowly improved overall my symptoms slowly decreased...\u0027\"]), Code(slug=\u0027symptom-comparison-limit\u0027, name=\u0027Desire for symptom comparison but finding it unhelpful\u0027, description=\u0027Participants want to compare symptoms for reassurance but find it unhelpful or misleading due to wide symptom variation among individuals, making direct comparison counterproductive.\u0027, quotes=[\"\u0027...people want to compare their symptoms against mine... to see if we\u0027re the same...\u0027\", \"\u0027...don\u0027t get too caught up on comparing symptoms...\u0027\"]), Code(slug=\u0027symptom-management-palliation\u0027, name=\u0027Using symptom management mainly for comfort rather than recovery\u0027, description=\u0027Symptom management is described as largely palliative to ease discomfort, with treatments alleviating suffering temporarily but not addressing underlying illness, which needs broader healing strategies.\u0027, quotes=[\"\u0027...symptom management that i did was more palliative not about recovery...\u0027\", \"\u0027...if i had pain i might take painkillers or see doctor for sedatives...\u0027\"]), Code(slug=\u0027personalized-recovery-plans\u0027, name=\"Need to tailor recovery plans individually to person\u0027s lifestyle and journey\", description=\"Participants highlight importance of personalized recovery plans adapted to individual\u0027s unique symptoms, lifestyle and disease experience, as pacing and treatments vary between individuals.\", quotes=[\"\u0027...somebody\u0027s recovery plan ... needs to be tailored...\u0027\", \"\u0027...pacing has to be tailored individually because their life is so different...\u0027\"]), Code(slug=\u0027frustration-symptom-fix\u0027, name=\u0027Frustration and disappointment from focusing on symptom-specific fixes\u0027, description=\u0027Participants report desperation and disillusionment from searching for symptom fixes, spending extensive time and money on treatments without holistic healing, leading to emotional exhaustion and need for alternative strategies.\u0027, quotes=[\"\u0027...spent thousands of hours googling symptoms...\u0027, \u0027...almost poisoning myself by buying organic elderberries...\u0027\", \"\u0027...needed a more comprehensive strategy rather than symptom by symptom fixes...\u0027\"]), Code(slug=\u0027emotional-boundaries-symptoms\u0027, name=\u0027Setting emotional boundaries around discussing past symptoms\u0027, description=\u0027Participants set limits on discussing past symptoms and one-on-one symptom troubleshooting to avoid trauma and overwhelm, preserving well-being while sharing recovery stories positively.\u0027, quotes=[\"\u0027...have boundaries ... not talking about old symptoms ...\u0027\", \"\u0027...writing my story took forever because it\u0027s traumatizing going back...\u0027\"]), Code(slug=\u0027walking-miracle-gratitude\u0027, name=\u0027Walking miracle gratitude for life after chronic illness\u0027, description=\u0027Participant expresses deep appreciation for recovering to a life once only dreamed of, enjoying life with childlike wonder and daily gratitude despite occasional setbacks.\u0027, quotes=[\"\u0027...i have to catch myself and be like you are a walking miracle like this is incredible\u0027\", \"\u0027It\u0027s like being like when you watch a six year old wandering...\u0027\"]), Code(slug=\u0027difficulty-relating-healthy\u0027, name=\u0027Difficulty relating to healthy friends post illness\u0027, description=\u0027Participant struggles maintaining friendships with healthy friends who complain or take health for granted, experiencing detachment and missing activities like working out.\u0027, quotes=[\"\u0027...friends who\u0027ve never been through it ... complain about their lives ... detachment\u0027\", \"\u0027...i really struggle with people who seem physically able but choose not to...\u0027\"]), Code(slug=\u0027diagnosis-delay-misdiagnosis\u0027, name=\u0027Frustration with delayed diagnosis and misdiagnosis\u0027, description=\"Participant recounts initial fibromyalgia diagnosis ignoring fatigue, leading to delayed appropriate diagnosis and frustration with medical system\u0027s lack of understanding and care.\", quotes=[\"\u0027...diagnosed with fibromyalgia ignoring fatigue... no treatment for many years...\u0027\", \"\u0027It took a while before chronic fatigue diagnosis...\u0027\"]), Code(slug=\u0027self-advocacy-healthcare\u0027, name=\u0027Self advocacy and research to access better healthcare\u0027, description=\u0027Participant actively researched and managed health, connecting with knowledgeable providers who identified underlying infections, aiding diagnosis and treatment.\u0027, quotes=[\"\u0027...researching doctors as much as i could ... moved to get better care...\u0027\", \"\u0027...linked with doctors testing underlying infections...\u0027\"]), Code(slug=\u0027genetic-mitochondrial-treatment\u0027, name=\u0027Discovery and treatment of genetic mitochondrial disease\u0027, description=\u0027Diagnosis of mitochondrial DNA depletion syndrome explained infections and fatigue; treatment focused on mitochondrial support helped regain strength and combat infections, marking recovery progress.\u0027, quotes=[\"\u0027...mitochondrial disease called mitochondrial dna depletion syndrome...\u0027\", \"\u0027...put on cocktail to boost mitochondria and fight infections...\u0027\"]), Code(slug=\u0027drastic-lifestyle-changes\u0027, name=\u0027Drastic lifestyle changes including diet and environment for recovery\u0027, description=\u0027Significant lifestyle changes like elimination diet, gradual movement rehab, and removing toxins were key to healing, with dietary modifications reducing inflammation and aiding recovery.\u0027, quotes=[\"\u0027...dramatically change diet using food as medicine...\u0027\", \"\u0027...removed toxic ingredients and used water filtration...\u0027\"]), Code(slug=\u0027overcoming-sugar-addiction\u0027, name=\u0027Overcoming intense sugar addiction to support healing\u0027, description=\u0027Participant overcame physical sugar addiction disrupting health and sleep through gut healing and probiotics, resulting in diminished cravings and healthier eating habits.\u0027, quotes=[\"\u0027Sugar was a massive one ... clearly had physical addiction...\u0027\", \"\u0027...up in middle of night every night and eat sugar\u0027\"]), Code(slug=\u0027movement-therapy-gentle-rehab\u0027, name=\u0027Movement therapy as gentle rehabilitation rather than exercise\u0027, description=\u0027Participant emphasizes very gradual, gentle movement for rehabilitation rather than typical exercise, balancing activity with rest to avoid relapse.\u0027, quotes=[\"\u0027...gradually increase ability to move ... one to two minutes a day initially...\u0027\", \"\u0027...couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed...\u0027\"]), Code(slug=\u0027psychological-growth-illness\u0027, name=\u0027Psychological impact and personal growth from chronic illness experience\u0027, description=\u0027Participant reflects on how illness changed identity, values, spirituality, fostering humility, acceptance, spiritual growth, gratitude and deeper appreciation for life and relationships.\u0027, quotes=[\"\u0027It humbled me ... changed me ... i wouldn\u0027t say i had spirituality before\u0027\", \"\u0027...illness catapults our growth and puts us in a better direction\u0027\"]), Code(slug=\u0027pregnancy-anxiety-relapse\u0027, name=\u0027Fear and anxiety about pregnancy symptoms being illness relapse\u0027, description=\u0027Participant describes anxiety and uncertainty distinguishing pregnancy symptoms from illness relapse, learning self-compassion and cautious optimism about health journey.\u0027, quotes=[\"\u0027I keep reminding myself these are normal symptoms... fatigue or relapse?\u0027\", \"\u0027...normal to have headaches when pregnant, normal to feel tired...\u0027\"]), Code(slug=\u0027hope-positivity-others-recover\u0027, name=\u0027Hope and positivity through seeing others recover from chronic illness\u0027, description=\u0027Participant gains essential hope and motivation by seeing recovery stories, highlighting importance of community and shared experience to sustain perseverance through chronic illness.\u0027, quotes=[\"\u0027...so nice to see many people getting past these things\u0027\", \"\u0027...people start reaching out to me, i recovered as well...\u0027\"]), Code(slug=\u0027self-empowerment-knowledge-faith\u0027, name=\u0027Self empowerment through knowledge acquisition and faith in recovery\u0027, description=\u0027Participant credits self-education on illness combined with spiritual trust and faith as key to recovery, emphasizing trust in healing process and rejection of limiting prognoses.\u0027, quotes=[\"\u0027...had to go through years of research and learning\u0027\", \"\u0027It was like getting a bachelor\u2019s degree in chronic illness\u0027\"]), Code(slug=\u0027scary-confusing-early-illness\u0027, name=\u0027Scary and confusing early illness experience\u0027, description=\u0027Participant describes onset of chronic fatigue as frightening and confusing, with overwhelming health decline requiring university leave and grieving process.\u0027, quotes=[\"\u0027...felt a bit fluy felt a bit strange felt a bit scared because it felt really weird\u0027\", \"\u0027...didn\u0027t know what was going on ... really scary time\u0027\"]), Code(slug=\u0027feeling-isolated-illness\u0027, name=\u0027Feeling isolated due to illness\u0027, description=\u0027Participant felt lonely after returning home separated from university friends, relying primarily on family for support during tough times.\u0027, quotes=[\"\u0027...all my friends from home had gone to university ... didn\u0027t really have anyone other than family\u0027\", \"\u0027...it was a very tough time\u0027\"]), Code(slug=\u0027reject-depression-diagnosis\u0027, name=\u0027Rejection of depression diagnosis and emotional awareness\u0027, description=\u0027Participant rejected doctor depression diagnosis, believing deeper physical illness despite emotional challenges and depression related to illness.\u0027, quotes=[\"\u0027one of the first doctors said she just thought i was depressed\u0027\", \"\u0027i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell\u0027\"]), Code(slug=\u0027hope-meditation-yoga\u0027, name=\u0027Hope from meditation and yoga practices\u0027, description=\u0027Early meditation, yoga and breath work brought some relief and hope though benefits were sometimes temporary and inconsistent during long recovery.\u0027, quotes=[\"\u0027...perhaps meditation and yoga can help me heal\u0027\", \"\u0027...felt different after doing alternate nostril breathing\u0027\"]), Code(slug=\u0027desperation-trying-therapies\u0027, name=\u0027Desperation leads to trying various alternative therapies\u0027, description=\u0027Participant tried multiple alternative therapies such as acupuncture, reiki, nutrition, colon hydrotherapy out of desperation, with limited or mixed success.\u0027, quotes=[\"\u0027...went for reiki and this and that\u0027\", \"\u0027...flew to america to work with healer\u0027\"]), Code(slug=\u0027suppressed-anger-trauma\u0027, name=\u0027Realization of suppressed anger and unresolved trauma\u0027, description=\u0027Participant recognized suppressed anger and trauma affecting recovery, identifying emotional blocks and unresolved feelings contributing to physical symptoms.\u0027, quotes=[\"\u0027...had suppressed anger and unresolved trauma in my system\u0027\", \"\u0027...avoiding conflict at all costs\u0027\"]), Code(slug=\u0027mindbody-trauma-understanding\u0027, name=\u0027Mind-body connection and trauma understanding\u0027, description=\u0027Participant found healing by exploring mind-body link, viewing symptoms as trauma manifestations such as freeze response, and identifying emotional triggers.\u0027, quotes=[\"\u0027...looking at symptoms ... emotion underlying this symptom\u0027\", \"\u0027...impact of trauma on my system manifesting physically like a freeze response\u0027\"]), Code(slug=\u0027authentic-self-expression\u0027, name=\u0027Learning authentic self-expression and setting boundaries\u0027, description=\u0027Recovery involved learning to express authentic emotions and needs without fear, employing communication skills to balance self-care and relationships.\u0027, quotes=[\"\u0027learning to be more myself more authentic\u0027\", \"\u0027learning non violent communication...\u0027\"]), Code(slug=\u0027spiritual-experience-healing\u0027, name=\u0027Spiritual experience as part of healing journey\u0027, description=\u0027Spiritual awakening, meditation, and mystical experiences were deep and sometimes destabilizing parts of recovery, requiring balance of spiritual insight and daily functioning.\u0027, quotes=[\"\u0027...spiritual awakening\u0027\", \"\u0027...felt like connecting with the whole universe\u0027\"]), Code(slug=\u0027ongoing-self-care-post-recovery\u0027, name=\u0027Ongoing self-care and regulation post recovery\u0027, description=\u0027Participant manages emotional and trauma symptoms post-recovery with self-regulation strategies including nature exposure and therapeutic work to maintain well-being.\u0027, quotes=[\"\u0027...periodically trauma type symptoms\u0027\", \"\u0027...go do work with a practitioner or spend night time in nature\u0027\"]), Code(slug=\u0027career-shift-healing\u0027, name=\u0027Career shift driven by healing experience\u0027, description=\u0027Healing journey influenced career towards coaching and therapeutic work, integrating personal recovery insights professionally while continuing learning and practices.\u0027, quotes=[\"\u0027...lots of therapeutic and coaching trainings\u0027\", \"\u0027...nearly twenty years working in this field\u0027\"]), Code(slug=\u0027familial-ancestral-trauma\u0027, name=\u0027Recognizing familial and ancestral trauma impact on health\u0027, description=\u0027Participant recognizes ancestral and family trauma influencing illness patterns and wider systemic generational factors contributing to chronic fatigue symptoms.\u0027, quotes=[\"\u0027...a lot of my trauma wasn\u0027t personal but was ancestral ... from family line\u0027\", \"\u0027...illness in one person might be a wider family system issue\u0027\"]), Code(slug=\u0027trauma-sudden-crisis\u0027, name=\u0027Trauma leading to sudden health crisis and exhaustion\u0027, description=\u0027Sexual assault and subsequent infection triggered severe exhaustion and ME/CFS symptoms like insomnia, brain fog and digestive issues lasting years.\u0027, quotes=[\"\u0027...sexually assaulted and that led to urinary tract infection ... system blacked out ... flu twenty four seven\u0027\", \"\u0027...digestive issues ... hot flashes even though young\u0027\"]), Code(slug=\u0027fear-uncertainty-diagnosis\u0027, name=\u0027Fear and uncertainty following chronic fatigue syndrome diagnosis\u0027, description=\u0027Diagnosis brought relief and devastating fear likened to death or life sentence with no cure, causing significant emotional distress.\u0027, quotes=[\"\u0027...so scared ... it was such a death sentence but also a life sentence\u0027\", \"\u0027...relieved to have diagnosis ... no cure\u0027\"]), Code(slug=\u0027resentment-diets-treatment\u0027, name=\u0027Resentment towards restrictive diets imposed in treatment\u0027, description=\u0027Participant resented elimination diets imposed without collaboration, feeling miserable and disempowered rather than active in the healing process.\u0027, quotes=[\"\u0027...totally miserable ... taking away anything you enjoy eating\u0027\", \"\u0027...felt it was being done to me ... perpetuating trauma\u0027\"]), Code(slug=\u0027regaining-agency-healing\u0027, name=\u0027Regaining personal agency and control in healing journey\u0027, description=\u0027Participant emphasizes reclaiming power and collaborating actively in healing process to avoid resentment and improve progress.\u0027, quotes=[\"\u0027...have to regain my agency and collaboration in healing\u0027\", \"\u0027...started realizing with diet ... otherwise i was resenting it\u0027\"]), Code(slug=\u0027mental-peace-symptoms\u0027, name=\u0027Experiencing mental peace while symptoms persist\u0027, description=\u0027Despite severe symptoms, participant achieved mental peace and nonresistance through meditation and spiritual connection, aiding emotional adaptation and recovery progress.\u0027, quotes=[\"\u0027...internal state of nonresistance or peace ... it just kind of happened\u0027\", \"\u0027...watching symptoms but felt peace\u0027\"]), Code(slug=\u0027brain-nervous-sys-fatigue\u0027, name=\u0027Adopting brain and nervous system explanation for ME/CFS symptoms\u0027, description=\u0027Learning symptoms result from brain and nervous system stress response shifted participant from helplessness to empowerment to calm nervous system and improve symptoms.\u0027, quotes=[\"\u0027...brain and nervous system processing stress ... not sick but stressed\u0027\", \"\u0027...brain generates pain fatigue because it senses danger\u0027\"]), Code(slug=\u0027self-compassion-recovery\u0027, name=\u0027Cultivating self-compassion to manage symptoms and aid recovery\u0027, description=\u0027Self-compassion reduces self-criticism that triggers stress and perpetuates symptoms, enabling emotional regulation and physical improvement.\u0027, quotes=[\"\u0027...self criticism activates danger alarm in brain ... feeds symptoms\u0027\", \"\u0027...talk to myself in a compassionate way ... what do you want right now\u0027\"]), Code(slug=\u0027personality-traits-illness\u0027, name=\u0027Role of personality traits like perfectionism in illness experience\u0027, description=\u0027Traits like perfectionism, people-pleasing, conscientiousness and emotional suppression contribute to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.\u0027, quotes=[\"\u0027perfectionist check, people pleasers check ... really conscientious\u0027\", \"\u0027holding the emotions ... like a pressure cooker\u0027\"]), Code(slug=\u0027emotional-processing-key\u0027, name=\u0027Acknowledging and processing emotions as key to recovery\u0027, description=\u0027Therapeutic practices like journaling and psychotherapy help express anger, grief and trauma, releasing emotional pressure contributing to nervous system hypervigilance and symptom worsening.\u0027, quotes=[\"\u0027...some psychotherapy was helpful ... talk through griefs\u0027\", \"\u0027...journaling your anger ... bottled up anger can be very harmful\u0027\"]), Code(slug=\u0027validation-hope-connection\u0027, name=\u0027Finding validation and hope through empathetic connection\u0027, description=\u0027Talking with someone who understood illness and brain-based mechanisms offered crucial validation and hope, triggering energy and belief in recovery.\u0027, quotes=[\"\u0027...spent three hours on phone ... finally heard the truth ... gave me hope\u0027\", \"\u0027...got up and ran around the block like never before\u0027\"]), Code(slug=\u0027energy-loss-fatigue\u0027, name=\u0027Energy loss and fatigue reducing daily activity\u0027, description=\u0027Participant experienced drop in energy and motivation, leading to extended rest periods and physical symptoms reflecting debilitating impact of CFS/long COVID.\u0027, quotes=[\"\u0027...started to get really tired ... no motivation to do activities...\u0027\", \"\u0027...laying in bed would get canker sores ... not feeling the best\u0027\"]), Code(slug=\u0027frustration-medical-tests\u0027, name=\u0027Frustration from inconclusive medical investigations\u0027, description=\u0027Participant felt uncertain and doubtful when tests showed normal despite symptoms, leading to exploration of mental health explanations and self-doubt.\u0027, quotes=[\"\u0027...multiple doctors said everything was perfectly fine ...\u0027\", \"\u0027...thought maybe something mentally causing this\u0027\"]), Code(slug=\u0027skepticism-brain-retraining\u0027, name=\u0027Initial skepticism towards brain retraining techniques\u0027, description=\u0027Participant doubted brain retraining programs at first, but upon commitment found them effective for symptom management and anxiety reduction.\u0027, quotes=[\"\u0027...program has hypnosis type of effect ... initially skeptical\u0027\", \"\u0027...committed and made a difference\u0027\"]), Code(slug=\u0027mental-stamina-recovery\u0027, name=\u0027Importance of mental stamina for physical activity recovery\u0027, description=\u0027Mental stamina and positive mindset were crucial for progressing from basic function to running a 10k and training for a marathon, highlighting mental role in physical recovery.\u0027, quotes=[\"\u0027...didn\u0027t have mental stamina to do that before...\u0027\", \"\u0027...positive affirmations and growth mindset...\u0027\"]), Code(slug=\u0027supportive-encouragement\u0027, name=\u0027Valuing supportive and personal encouragement during recovery\u0027, description=\u0027Encouragement and belief from recovery coach Jason boosted motivation and aided healing, illustrating importance of personal connection in recovery journey.\u0027, quotes=[\"\u0027...text messages saying i climbed mountain ... i know you can do it\u0027\", \"\u0027...great having someone who believes in you that much...\u0027\"]), Code(slug=\u0027empowering-self-statements\u0027, name=\u0027Developing empowering self-statements to combat anxiety\u0027, description=\u0027Participant learned to replace disempowering anxiety statements with growth-oriented affirmations fostering positive and hopeful mindset for emotional resilience.\u0027, quotes=[\"\u0027...saying i am anxious is disempowering ... say i am on my way to getting better\u0027\", \"\u0027...it\u0027s a journey rather than a stuck state...\u0027\"]), Code(slug=\u0027recovery-is-journey\u0027, name=\u0027Recognizing recovery as a journey, not a fixed state\u0027, description=\u0027Recovery involves ongoing management and coping rather than symptom absence, using tools to handle fluctuations and maintain progress without fear.\u0027, quotes=[\"\u0027...have tools to fix that ... life is stressful ... i can refocus\u0027\", \"\u0027...journey ... can\u0027t keep comparing yourself...\u0027\"]), Code(slug=\u0027long-covid-frustration-isolation\u0027, name=\u0027Feeling frustrated and isolated due to long COVID limitations\u0027, description=\u0027Participants express frustration with ongoing symptoms and limitations from long COVID, feeling isolated and disconnected from prior healthy life and social connections.\u0027, quotes=[\"\u0027...feel drained all the time ... used to be active now barely manage walk...\u0027\", \"\u0027...people don\u2019t see struggle you go through ... makes you feel alone...\u0027\"]), Code(slug=\u0027desire-understanding-validation\u0027, name=\u0027Desire for understanding and validation from others\u0027, description=\u0027Participants strongly desire acknowledgement and belief in their long COVID and ME/CFS experience to reduce stigma and obtain emotional support.\u0027, quotes=[\"\u0027...sometimes it feels like people think it\u2019s in your head...\u0027\", \"\u0027...validation would mean the world ... proves not making this up...\u0027\"]), Code(slug=\u0027regain-physical-energy\u0027, name=\u0027Need to regain physical energy and return to normal function\u0027, description=\u0027Participants express longing to regain physical energy and resume routine activities without debilitating fatigue, describing simple tasks as exhausting.\u0027, quotes=[\"\u0027...if i could get some energy back ... feel like myself\u0027\", \"\u0027...fatigue so overwhelming even making meal feels like climbing mountain...\u0027\"]), Code(slug=\u0027search-effective-treatment\u0027, name=\u0027Search for effective treatment and cures for symptom relief\u0027, description=\u0027Participants discuss ongoing search for treatments that relieve symptoms or bring recovery, facing frustration with lack of clear options and trial and error approaches.\u0027, quotes=[\"\u0027...tried so many treatments but nothing works...\u0027\", \"\u0027...keep hoping for a cure to move on with life...\u0027\"]), Code(slug=\u0027coping-identity-changes\u0027, name=\u0027Coping with changes to identity and sense of self\u0027, description=\u0027Participants mourn their previous healthy self and struggle with new limitations and changed roles, affecting identity and self-concept.\u0027, quotes=[\"\u0027...don\u2019t recognize person i am now compared to before...\u0027\", \"\u0027...hard to accept not doing what used to do...\u0027\"]), Code(slug=\u0027anger-fight-flight\u0027, name=\u0027Anger as fight or flight physiology driving chronic pain\u0027, description=\u0027Anger is a survival physiological response generated by fight or flight sensations causing chronic pain deeply wired in nervous system, uncontrollable by conscious mind.\u0027, quotes=[\"\u0027...biggest factor keeping people in pain is anger ... fight or flight sensation\u0027\", \"\u0027anger and anxiety are physiological survival responses ... no control\u0027\"]), Code(slug=\u0027pain-memory-neuroplasticity\u0027, name=\u0027Chronic pain as embedded memory in neuroplastic pain circuits\u0027, description=\u0027Chronic pain seen as permanent brain memory in pain circuits that cannot be erased; fighting pain reinforces it; acceptance allows separation and symptom reduction.\u0027, quotes=[\"\u0027...pain circuits absolutely permanent like phantom limb pain\u0027\", \"\u0027...fighting pain reinforces it; you learn to separate yourself from pain\u0027\"]), Code(slug=\u0027unconscious-brain-survival\u0027, name=\u0027Unconscious brain drives survival responses and chronic symptoms\u0027, description=\u0027Unconscious brain processes vast information to keep alive, chronic symptoms arise from physiological threat states beyond conscious control, explaining difficulty managing illness consciously.\u0027, quotes=[\"\u0027...unconscious brain keeps you alive ... conscious brain only small part\u0027\", \"\u0027...can\u0027t control it like dragging with handbrakes\u0027\"]), Code(slug=\u0027letting-go-fighting-pain\u0027, name=\u0027Letting go of fighting pain as crucial to healing process\u0027, description=\u0027Healing requires shifting from fighting pain to letting go and acceptance, reducing reinforcement of pain circuits and creating new neural pathways supporting life on own terms.\u0027, quotes=[\"\u0027...hardest part is people can\u0027t help but try to fix themselves\u0027\", \"\u0027...learn to separate yourself from pain and get on with life\u0027\"]), Code(slug=\u0027threat-physiology-chronic-symptoms\u0027, name=\u0027Threat physiology underlies chronic mental and physical symptoms\u0027, description=\u0027Chronic symptoms including pain, anxiety and depression stem from sustained threat physiology causing nervous system hyperactivity and inflammation, requiring calming physiology rather than only treating symptoms.\u0027, quotes=[\"\u0027...every chronic disease related to chronic stress\u0027\", \"\u0027...anxiety depression bipolar ocd schizophrenia are metabolic inflammatory disorders\u0027\"]), Code(slug=\u0027separating-negative-thoughts\u0027, name=\u0027Separating oneself from negative and repetitive thoughts\u0027, description=\u0027Separating identity from negative intrusive thoughts using therapies reduces physiological arousal caused by thoughts that fuel anxiety and pain.\u0027, quotes=[\"\u0027...separate from the thoughts that\u0027s where behavior therapy comes into play\u0027\", \"\u0027...direct relationship between thoughts and suicide attempts\u0027\"]), Code(slug=\u0027nurturing-joy-healing\u0027, name=\u0027Nurturing joy as a vital part of healing journey\u0027, description=\u0027Joy through positive experiences and relationships supports healing by building new neural pathways, countering threat physiology and enabling flourishing beyond pain.\u0027, quotes=[\"\u0027...nurture joy if you\u2019re fighting stress not possible\u0027\", \"\u0027...good food good wine good friends promote healing\u0027\"]), Code(slug=\u0027sleep-diet-exercise-nervous-system\u0027, name=\u0027Importance of sleep diet and exercise for calming nervous system\u0027, description=\u0027Sleep, diet and exercise foundational for calming nervous system, regulating physiology, reducing inflammation and supporting healing and regeneration.\u0027, quotes=[\"\u0027...address sleep is number one...\u0027\", \"\u0027...lack of sleep causes chronic back pain not the way around\u0027\"]), Code(slug=\u0027physiology-over-consciousness\u0027, name=\"Physiology\u0027s dominance over conscious brain in symptom experience\", description=\u0027Physiological nervous system responses overpower conscious brain\u2019s control of symptoms; fight or flight inhibits cognitive function, making conscious efforts insufficient alone.\u0027, quotes=[\"\u0027...half a million times stronger than conscious brain\u0027\", \"\u0027...highest thinking brain neocortex doesn\u2019t work in fight or flight\u0027\"]), Code(slug=\u0027skepticism-starting-point-healing\u0027, name=\u0027Using skepticism as a starting point to engage in healing\u0027, description=\u0027Skepticism is a valid initial stance for learning new healing approaches, encouraging connection to experience and curiosity rather than blind belief to gradually shift physiology and symptoms.\u0027, quotes=[\"\u0027...don\u0027t believe me ... connect to skepticism ... starting point\u0027\", \"\u0027...start doing the work now letting your brain change\u0027\"]), Code(slug=\u0027book-key-pain-recovery\u0027, name=\u0027Book as key to chronic pain recovery approach\u0027, description=\u0027A specific book was pivotal for understanding and recovery from chronic pain, resonating with symptoms and personality, influencing therapeutic career choice.\u0027, quotes=[\"\u0027...book by john sono ... back pain gone ... health problems went away\u0027\", \"\u0027...personality characteristics true for me and most clients\u0027\"]), Code(slug=\u0027emotion-focused-pain-therapy\u0027, name=\u0027Emotion-focused therapy as core to pain recovery process\u0027, description=\u0027Intensive Short-Term Dynamic Psychotherapy (ISTDP) is central for chronic pain recovery, focusing on accessing and processing suppressed emotions like anger and rage causing physical pain.\u0027, quotes=[\"\u0027...core intervention is emotion focused approach ... all emotions healthy\u0027\", \"\u0027...therapy helps notice bodily tension often anxiety about anger or rage\u0027\"]), Code(slug=\u0027therapy-engagement-barriers\u0027, name=\u0027Barriers to engaging with emotion-focused therapy include fear and trust issues\u0027, description=\u0027Patients face fears and defenses that hinder engagement with emotion-focused therapy; require gradual emotional exposure and support to lower defenses and benefit from treatment.\u0027, quotes=[\"\u0027...some folks work quickly others more complicated with challenges\u0027\", \"\u0027...ISTDP difficult but supportive ... gradual emotional threshold building\u0027\"]), Code(slug=\u0027professional-acceptance-therapy\u0027, name=\u0027Growing acceptance of emotion-focused therapy among medical professionals\u0027, description=\u0027Medical community increasingly recognizes and integrates emotion-focused therapy for chronic pain, with training, referrals, and scientific support increasing over time.\u0027, quotes=[\"\u0027...most folks come because they accept this approach\u0027\", \"\u0027...training doctors in local hospital ... growing recognition\u0027\"]), Code(slug=\u0027mindset-shift-therapy-acceptance\u0027, name=\u0027Mindset shift required for accepting therapy as part of recovery\u0027, description=\u0027Acceptance of therapy requires paradigm shift from seeing mental health as separate to integrating physical and emotional health, moving from coping to true recovery path.\u0027, quotes=[\"\u0027...mental health and physical health often thought separate\u0027\", \"\u0027...therapy seen as coping not to get better initially\u0027\"]), Code(slug=\u0027emotions-source-physical-pain\u0027, name=\u0027Understanding emotions as the source of physical pain\u0027, description=\u0027Emotions, especially unacceptable or dangerous ones, are converted into physical symptoms such as chronic pain; MRI research supports this process, validating psychological origins and need for emotional therapy.\u0027, quotes=[\"\u0027...strategies to ward off dangerous emotions turned into physical pain\u0027\", \"\u0027...chronic pain brains light up amygdala responsible for anger and rage\u0027\"])]\n\nPreliminary themes:\n\nthemes=[Theme(name=\u0027Experiencing relentless fatigue and energy crashes with post-exertion collapse\u0027, description=\u0027Participants describe extreme exhaustion where standing up or doing basic activities leads to complete energy drain, necessitating long periods of bed rest and causing severe impact on daily functioning, including being bedridden for months. This persistent fatigue cycles with relapses particularly after overexertion, underscoring the debilitating nature of their conditions.\u0027, code_slugs=[\u0027persistent-fatigue-and-energy-drain\u0027, \u0027overexertion-and-relapse-cycle\u0027, \u0027relentless-pushing-despite-limitations\u0027]), Theme(name=\u0027Struggling to accept illness limits while refusing to give up hope\u0027, description=\u0027Participants reveal a tension between denial and acceptance of chronic illness limitations. They maintain a positive and obstinate mindset, resisting the notion of permanent disability. Despite setbacks and long-term fatigue, they sustain hope, learning lifestyle changes and gradual self-awareness to manage symptoms while holding onto the belief of eventual remission rather than cure.\u0027, code_slugs=[\u0027realization-to-accept-lifestyle-changes\u0027, \u0027maintaining-hope-and-positivity-despite-chronic-illness\u0027, \u0027self-awareness-to-avoid-overexertion\u0027]), Theme(name=\u0027Embracing brain retraining programs to regain control and recovery\u0027, description=\"Participants initially skeptical of brain-based recovery methods, come to accept and engage with brain retraining that addresses protective \u0027fight or flight\u0027 responses encoded in the body\u2019s genes. They find validation and structured approaches that enable confidence and early positive signs, with brain retraining experienced as a crucial part of their recovery journey and self-healing process.\", code_slugs=[\u0027brain-retraining-as-a-recovery-path\u0027]), Theme(name=\u0027Learning boundaries and managing social demands to conserve energy\u0027, description=\u0027Participants emphasize the importance of setting clear boundaries to avoid energy depletion, such as letting non-essential calls go to voicemail and managing people-pleasing tendencies. They highlight struggle and growth in learning to say no and delay tasks, balancing social demands with personal health needs to prevent relapse and better manage chronic fatigue symptoms.\u0027, code_slugs=[\u0027learning-boundaries-to-manage-energy\u0027]), Theme(name=\u0027Difficulty with genuine rest and retraining habits for meaningful relaxation\u0027, description=\"Participants report difficulty with standard relaxation and meditation practices, struggling to let go and genuinely rest. They describe the challenge of retraining their minds to value and consistently implement \u0027real rest\u0027 like naps or meditation, essential for recovery but alien to ingrained habits and mental states shaped by chronic fatigue.\", code_slugs=[\u0027difficulty-with-relaxation-and-rest\u0027]), Theme(name=\u0027Frustration and emotional challenges from others misunderstanding illness and recovery\u0027, description=\u0027Participants express ongoing emotional struggle when others minimize or fail to understand their illness experience and recovery process. They describe feelings of frustration, flaring up, and limited patience with ignorance or misjudgment, especially from those who never had the illness or who challenge their lifestyle adaptations, revealing a significant social and psychological burden.\u0027, code_slugs=[\u0027frustration-with-misunderstanding-by-others\u0027])]\nthemes=[Theme(name=\u0027Seeking comprehensive healing beyond individual MECFS symptom treatments\u0027, description=\u0027Participants expressed the importance of a holistic recovery approach, supporting the body as a whole rather than targeting specific symptoms. They found that symptom management provided only palliative relief and was insufficient for healing. Focusing too much on isolated symptoms was overwhelming and not helpful, while a broad, integrated strategy led to gradual overall improvement and resolution of symptoms.\u0027, code_slugs=[\u0027holistic-recovery-focus-mecfs\u0027, \u0027symptom-management-as-palliation-not-cure\u0027]), Theme(name=\u0027Feeling frustrated and disillusioned by symptom-specific research and treatments\u0027, description=\u0027Participants shared feelings of desperation and disappointment from extensively researching specific symptoms and fixes, including costly, risky, and ineffective treatments. They experienced emotional exhaustion after repeated failures to find symptom-specific cures. This led to recognition that a more comprehensive healing strategy was necessary beyond attempting to stop symptoms one-by-one.\u0027, code_slugs=[\u0027frustration-with-symptom-focused-help-seeking\u0027, \u0027holistic-recovery-focus-mecfs\u0027]), Theme(name=\u0027Wanting hopeful reassurance through symptom and recovery comparisons but finding it unproductive\u0027, description=\u0027Participants desired to compare their symptoms and recovery stories with others to find hope and reassurance. However, the wide variability of MECFS symptoms made such comparisons misleading and discouraging. They emphasized the importance of recognizing individual differences and cautioned against overreliance on symptom matching or blood test comparisons to predict recovery chances or treatment success.\u0027, code_slugs=[\u0027symptom-comparison-limitations\u0027]), Theme(name=\u0027Needing personalized recovery plans tailored to individual symptoms, lifestyle, and journeys\u0027, description=\u0027Participants highlighted that recovery from MECFS must be deeply personal, with plans tailored to individuals\u2019 unique symptoms, severity, life circumstances, and experiences. They stressed that pacing and treatments should be customized rather than adopting a one-size-fits-all approach. Building recovery plans based on one\u2019s own body and intuition fosters empowerment and supports more effective healing paths.\u0027, code_slugs=[\u0027need-for-personalized-recovery-plans\u0027]), Theme(name=\u0027Setting emotional boundaries to protect well-being when discussing difficult symptoms\u0027, description=\u0027Participants recognized the emotional toll of revisiting and discussing past symptoms through one-on-one conversations and social media interactions. They emphasized establishing boundaries to avoid overwhelming situations, protect mental health, and preserve personal space. Despite the desire to share recovery stories and receive positive feedback, they found discussions about symptoms often retraumatizing, requiring limits on symptom-focused exchanges.\u0027, code_slugs=[\u0027emotional-boundaries-around-symptom-discussion\u0027])]\nthemes=[Theme(name=\u0027Deep gratitude and awe for renewed life after chronic illness recovery\u0027, description=\u0027This theme captures the participant\\\u0027s overwhelming sense of gratitude and amazement about living a life once only dreamed of due to chronic illness recovery. They describe moments of feeling like a \"walking miracle,\" appreciating life with childlike wonder, and maintaining joy despite setbacks. This theme highlights how the participant values each day as a precious victory and reflects a profound shift in perspective and appreciation for life.\u0027, code_slugs=[\u0027walking-miracle-gratitude-for-life-38\u0027]), Theme(name=\u0027Struggle with detachment from healthy friends who take wellness for granted\u0027, description=\u0027Participants feel a sense of detachment and difficulty relating to friends who have never experienced chronic illness, especially when those friends complain about life or neglect physical health. The participant misses activities like working out and struggles to understand those who are able but unwilling to engage in wellness. This theme reflects the emotional distance and isolation felt in social relationships post-illness recovery.\u0027, code_slugs=[\u0027difficulty-relating-to-healthy-friends-81\u0027]), Theme(name=\u0027Frustration over medical misdiagnosis and delayed recognition of chronic fatigue symptoms\u0027, description=\u0027The participant recounts the prolonged and frustrating journey through misdiagnosis and dismissal by medical professionals, initially diagnosed with fibromyalgia while fatigue symptoms were overlooked. This theme underscores the experience of receiving little help or understanding over many years, contributing to a sense of neglect and uncertainty in the healthcare process.\u0027, code_slugs=[\u0027diagnosis-delay-and-misdiagnosis-60\u0027]), Theme(name=\u0027Active self-advocacy and persistence in seeking knowledgeable healthcare providers\u0027, description=\"This theme reflects the participant\u0027s proactive efforts to manage their health through self-rehabilitation, researching physicians, relocating for better care, and collaborating with investigative providers. The participant describes working with specialists who carefully examined underlying infections and genetic factors, showing determination and resourcefulness in overcoming healthcare system challenges.\", code_slugs=[\u0027self-advocacy-for-healthcare-72\u0027, \u0027genetic-condition-discovery-and-treatment-75\u0027]), Theme(name=\u0027Major lifestyle changes including diet, movement, and toxin avoidance for healing\u0027, description=\u0027Participants undertake drastic modifications such as elimination diets targeting dairy, gluten, sugar, and nightshades, coupled with gentle movement therapies and removal of environmental toxins. This theme captures the careful, individualized approach to healing through body-focused changes and gradual physical rehabilitation, emphasizing patience and persistence in recovery.\u0027, code_slugs=[\u0027drastic-lifestyle-changes-for-recovery-81\u0027, \u0027overcoming-sugar-addiction-for-healing-56\u0027, \u0027movement-therapy-as-gentle-rehab-63\u0027]), Theme(name=\u0027Personal transformation and spiritual growth through chronic illness experience\u0027, description=\u0027This theme highlights the profound psychological and spiritual shifts participants undergo, including humility, acceptance of help, redefined self-worth beyond career achievements, and a deepened faith. The illness is seen as a catalyst for personal growth, reshaping identity and spirituality, fostering gratitude, and instilling new values about life and relationships.\u0027, code_slugs=[\u0027psychological-impact-and-growth-from-illness-80\u0027, \u0027self-empowerment-through-knowledge-and-faith-64\u0027]), Theme(name=\u0027Anxiety and self-compassion in distinguishing pregnancy symptoms from relapse fears\u0027, description=\u0027Participants describe the anxiety of interpreting pregnancy-related symptoms such as fatigue and headaches within the context of past chronic illness. They emphasize the need to differentiate normal pregnancy experiences from illness relapse, practicing self-compassion and cautious optimism, while acknowledging the triggering nature of these symptoms.\u0027, code_slugs=[\u0027fear-and-anxiety-during-pregnancy-after-illness-64\u0027]), Theme(name=\u0027Hope inspired by recovery stories and community connection in chronic illness\u0027, description=\"This theme reflects the vital role of witnessing others\u0027 recovery journeys in maintaining hope and motivation. Participants stress the loneliness and despair without such examples, and the importance of shared experiences and community support for sustaining perseverance through the difficult, long recovery process of chronic illness.\", code_slugs=[\u0027hope-and-positivity-in-chronic-illness-recovery-57\u0027])]\nthemes=[Theme(name=\u0027Overwhelming fear and isolation at initial chronic fatigue onset\u0027, description=\u0027Participants describe the early stages of chronic fatigue as a scary and confusing experience, feeling a bit fluy, strange, and scared. They face emotional challenges, grief and uncertainty as symptoms emerge without clear diagnosis, compounded by isolation from friends and the university environment. The loss of normal activities and social contact leads to a tough, lonely time where only family remains as support.\u0027, code_slugs=[\u0027scary-and-confusing-early-illness-experience\u0027, \u0027feeling-isolated-due-to-illness\u0027]), Theme(name=\u0027Struggling with misdiagnosis and longing for real understanding\u0027, description=\u0027Participants recount early experiences of medical dismissal, such as doctors attributing symptoms solely to depression. They recognize the emotional impact but feel there is more going on physically. This misunderstanding leads to frustration and a strong desire to find real explanations and effective healing approaches beyond conventional medicine.\u0027, code_slugs=[\u0027rejection-of-depression-diagnosis-and-emotional-awareness\u0027]), Theme(name=\u0027Clinging to hope through meditation and fragmented relief efforts\u0027, description=\u0027Engaging in meditation, yoga, breath work, and guided relaxation offers participants temporary relief and moments of feeling better, providing hope that some control over their health is possible. Yet, these benefits are often short-lived and unstable, requiring ongoing effort to find deeper shifts in recovery.\u0027, code_slugs=[\u0027hope-from-meditation-and-yoga-practices\u0027]), Theme(name=\u0027Desperation spurs trying diverse alternative therapies seeking cure\u0027, description=\u0027Out of urgency to recover, participants try multiple alternative therapies such as acupuncture, reiki, nutrition therapy, and even colon hydrotherapy, often with mixed or limited success. This represents a willingness to explore all possible avenues despite invasiveness or skepticism, driven by a deep yearning to reclaim health.\u0027, code_slugs=[\u0027desperation-leads-to-trying-various-alternative-therapies\u0027]), Theme(name=\u0027Uncovering and releasing suppressed anger and old trauma for healing\u0027, description=\u0027Participants identify profound suppression of anger and unresolved trauma as pivotal barriers to recovery. Recognizing patterns of avoiding conflict and holding unexpressed emotions leads to emotional breakthroughs. This process helps participants address the mind-body connection and understand physical symptoms as manifestations of trauma responses, enhancing self-awareness and healing potential.\u0027, code_slugs=[\u0027realization-of-suppressed-anger-and-unresolved-trauma\u0027, \u0027mind-body-connection-and-trauma-understanding\u0027]), Theme(name=\u0027Learning to communicate authentically while setting healthy boundaries\u0027, description=\u0027Recovery journeys involve participants learning how to be authentic in expressing their feelings and needs without fearing upsetting others. Non-violent communication and boundary-setting skills help them balance self-care and relationships, moving from suppression to gentle assertiveness and honoring personal needs.\u0027, code_slugs=[\u0027learning-authentic-self-expression-and-setting-boundaries\u0027]), Theme(name=\u0027Integrating profound spiritual awakenings and meditation challenges\u0027, description=\"Spiritual experiences such as kundalini awakening, mystical meditation, and out-of-body sensations play a significant but destabilizing role in participants\u0027 recovery. While these moments connect them deeply to the universe and provide meaningful insights, they sometimes interfere with daily functioning, necessitating a balance between spiritual growth and practical life demands.\", code_slugs=[\u0027spiritual-experience-as-part-of-healing-journey\u0027]), Theme(name=\u0027Sustained self-care and emotional regulation beyond recovery\u0027, description=\u0027Even years after initial healing, participants continue to manage emotional, trauma-related, or dissociative symptoms through therapeutic work, nature exposure, and self-regulation techniques. This ongoing effort ensures balance and well-being remains, reflecting an enduring commitment to health maintenance and vigilance against relapse.\u0027, code_slugs=[\u0027ongoing-self-care-and-regulation-post-recovery\u0027]), Theme(name=\u0027Healing journey inspires career change into coaching and therapy work\u0027, description=\"The prolonged recovery experience deeply influences participants\u0027 career paths, leading them to pursue therapeutic coaching, bodywork, and modalities like internal family systems. They integrate personal healing insights professionally, remaining lifelong learners who apply supportive practices to help others on their health journeys.\", code_slugs=[\u0027career-shift-driven-by-healing-experience\u0027]), Theme(name=\u0027Recognizing ancestral trauma\u2019s influence on illness and healing paths\u0027, description=\u0027Participants acknowledge the impact of ancestral and family lineage trauma on chronic fatigue development and recovery. They observe that illness can be rooted in wider family systems rather than just personal history, gaining awareness of generational health patterns and employing family constellation approaches to understand systemic illness dynamics.\u0027, code_slugs=[\u0027recognizing-familial-and-ancestral-trauma-impact-on-health\u0027])]\nthemes=[Theme(name=\u0027Overwhelming fear and devastation from ME/CFS diagnosis and limited medical support\u0027, description=\"After the participant\u0027s diagnosis of chronic fatigue syndrome, they felt terrified and devastated, describing it as a death or life sentence with no known cure. The participant recalls bawling and feeling hopeless when doctors confirmed no cure and a need to live with symptoms, leading to a profound emotional struggle and sense of lost future, despite relief at having a diagnosis to explain their decline.\", code_slugs=[\u0027fear-and-uncertainty-after-diagnosis\u0027]), Theme(name=\u0027Frustration and resentment from imposed restrictive diets and treatments lacking personal control\u0027, description=\u0027The participant experienced misery and resentment towards strict elimination diets and numerous supplements that were recommended by doctors and natural health practitioners without their input. Feeling like these interventions were being done to them rather than with them, the participant felt these measures perpetuated trauma and hindered healing because they lacked agency and were not tailored to their needs or preferences.\u0027, code_slugs=[\u0027resentment-towards-prescribed-diets\u0027, \u0027regaining-agency-in-healing\u0027]), Theme(name=\u0027Physical symptoms triggered by trauma and sustained by nervous system hypervigilance and emotional stress\u0027, description=\"The initial trigger for the participant\u0027s illness was a traumatic sexual assault followed by infection and physical collapse, causing classic ME/CFS symptoms including 24/7 flu-like exhaustion, insomnia, brain fog, and digestive issues. This theme highlights how unresolved trauma and ongoing psychological stress maintained neurological hypervigilance, perpetuating symptoms through the brain and nervous system\u0027s stress responses despite absence of identifiable physical damage.\", code_slugs=[\u0027trauma-led-health-crisis\u0027, \u0027brain-based-explanation-for-fatigue-symptoms\u0027]), Theme(name=\u0027Finding mental peace and spiritual connection to endure symptoms and support recovery\u0027, description=\u0027Despite persistent severe symptoms, the participant attained states of mental peace and nonresistance through meditation, yoga, and spiritual practices. This deep inner calmness and connection to something greater enabled the participant to observe symptoms without emotional turmoil, serving as a vital coping mechanism and foundation for emotional healing over their long recovery journey.\u0027, code_slugs=[\u0027mental-peace-despite-physical-symptoms\u0027]), Theme(name=\u0027Healing through emotional processing, self-compassion, and releasing bottled emotions\u0027, description=\u0027Addressing emotional grief, trauma, and suppressed anger through psychotherapy, journaling, and self-compassion was crucial to the participant\u2019s recovery. Embracing kindness toward oneself softened the blow of symptoms and reduced self-criticism that activated the brain\u2019s danger signals. Expressive writing and emotional release helped alleviate the pressure cooker effect of holding in feelings, allowing nervous system recalibration.\u0027, code_slugs=[\u0027self-compassion-supporting-recovery\u0027, \u0027importance-of-emotional-processing\u0027, \u0027impact-of-personality-on-symptom-perpetuation\u0027]), Theme(name=\u0027Validation and hope from empathetic connection and new understanding of illness\u0027, description=\u0027A pivotal experience was a long conversation with someone who truly understood the illness and explained the brain and nervous system\u2019s role in perpetuating symptoms. This validation from empathetic connection sparked a spontaneous remission and instilled a profound belief in the possibility of recovery. It shifted the participant\u2019s perspective from helplessness to hopeful empowerment by conveying that recovery is possible through calming the nervous system.\u0027, code_slugs=[\u0027validation-and-hope-from-connection\u0027])]\nthemes=[Theme(name=\u0027Experiencing energy loss and frustration from inconclusive medical answers\u0027, description=\u0027Participant felt a noticeable drop in energy and motivation, describing how fatigue led to extended rest and physical symptoms like canker sores. Despite visiting doctors who confirmed their vitals and blood work as normal, the participant experienced frustration and doubt, exploring mental health as a possible cause, highlighting the emotional uncertainty accompanying unexplained symptoms.\u0027, code_slugs=[\u0027energy-loss-and-fatigue-in-cfs-long-covid\u0027, \u0027frustration-of-inconclusive-medical-tests\u0027]), Theme(name=\u0027Initial doubts and subsequent trust in brain retraining healing techniques\u0027, description=\u0027Participant was initially skeptical about hypnosis and brain retraining methods offered by the program but found commitment to these techniques effective for symptom relief and anxiety management. The journey from doubt to acceptance shows a shift in mindset, embracing unconventional healing that fundamentally changed their approach to recovery.\u0027, code_slugs=[\u0027initial-skepticism-of-brain-retraining-technique\u0027]), Theme(name=\u0027Building mental stamina and positive mindset for physical recovery challenges\u0027, description=\u0027The participant highlighted the importance of developing mental stamina and adopting positive affirmations, enabling progression from basic daily functioning to running 10K races and training for marathons. This growth mindset and empowerment were pivotal in sustaining motivation and embracing physical challenges beyond previous limits.\u0027, code_slugs=[\u0027importance-of-mental-stamina-for-active-recovery\u0027]), Theme(name=\u0027Finding motivation through personal encouragement and belief from support\u0027, description=\u0027Participant valued the personalized, encouraging support they received from their coach, which boosted motivation and belief in recovery despite ongoing challenges. Regular texts and genuine belief from someone invested, even as a stranger, made a meaningful difference in maintaining hope and progress.\u0027, code_slugs=[\u0027valuing-supportive-encouragement-in-recovery\u0027]), Theme(name=\u0027Adopting empowering self-talk to transform anxiety into recovery progress\u0027, description=\"The participant discovered replacing disempowering anxiety statements with affirmations like \u0027I am on my way to getting better\u0027 fostered a positive, hopeful mindset. This shift transformed their experience of anxiety from feeling stuck to seeing it as a stage in an ongoing health journey, supporting emotional resilience.\", code_slugs=[\u0027developing-empowering-self-statements\u0027]), Theme(name=\u0027Accepting recovery as a continuous journey with tools for setbacks\u0027, description=\u0027Participant recognized recovery as an ongoing journey rather than a fixed, fully cured state, understanding that life will bring stress and anxious moments. They emphasized having tools to manage symptoms and refocus, cultivating confidence to maintain progress and face fluctuations without fear or discouragement.\u0027, code_slugs=[\u0027recognizing-the-journey-of-recovery-not-a-fix\u0027])]\nthemes=[Theme(name=\u0027Living with isolation and frustration from long COVID symptoms\u0027, description=\"This theme captures participants\u0027 feelings of being drained and disconnected due to persistent symptoms that limit physical and social activities. They express frustration with ongoing symptoms that drag them down and the emotional toll of feeling alone because others don\u0027t see or understand their daily struggle.\", code_slugs=[\u0027long-covid-frustration-and-isolation\u0027]), Theme(name=\u0027Seeking empathy and validation from family, doctors, and society\u0027, description=\u0027Participants strongly desire recognition and belief in their experiences with long COVID and ME/CFS. They emphasize how validation from doctors, family, and others is crucial to reduce feelings of stigmatization and misunderstanding, providing essential emotional support and helping them feel that their condition is real and acknowledged.\u0027, code_slugs=[\u0027desire-for-understanding-and-validation\u0027]), Theme(name=\u0027Yearning to recover physical strength and resume normal activities\u0027, description=\u0027There is a poignant longing among participants to regain lost physical energy and return to activities they once enjoyed, such as jogging, playing with children, and routine tasks. The overwhelming fatigue makes even simple tasks difficult, and participants express a strong need to feel like themselves by restoring their physical function and vitality.\u0027, code_slugs=[\u0027need-to-regain-physical-energy-and-function\u0027]), Theme(name=\u0027Persistent search for treatments that bring relief and hope for cure\u0027, description=\u0027Participants describe the emotional toll of trying many treatments without success, expressing heartbreak and disappointment. They maintain hope for an effective cure or therapy that will relieve symptoms, stop the pain and fatigue, and allow them to move forward with life beyond their illness.\u0027, code_slugs=[\u0027search-for-effective-treatment-and-cures\u0027]), Theme(name=\u0027Struggling with sense of self and identity after illness onset\u0027, description=\"This theme reflects participants\u0027 internal conflict as they mourn their healthy pre-illness identity and grapple with new limitations that alter their roles and self-perception. They speak to the difficulty of accepting these changes and feeling like they have lost their former selves amid the chronic illness experience.\", code_slugs=[\u0027coping-with-identity-changes\u0027])]\nthemes=[Theme(name=\u0027Experiencing anger and anxiety as uncontrollable physiological survival responses\u0027, description=\"Participants experience anger and anxiety not as psychological issues but as automatic fight or flight sensations generated by their body. These physiological survival responses drive chronic pain and related symptoms, overpowering conscious control and leading to deep frustration and feeling trapped by their body\u0027s intense reactions and threat states.\", code_slugs=[\u0027anger-fight-flight-physiology-chronic-pain\u0027, \u0027threat-physiology-explains-chronic-symptoms\u0027, \u0027role-of-physiology-over-conscious-control\u0027]), Theme(name=\u0027Living with chronic pain as a persistent brain-embedded memory and changing the pain relationship\u0027, description=\u0027Participants perceive chronic pain as an embedded memory circuit in their brain that cannot be erased, similar to phantom limb pain. Fighting this pain reinforces the circuits, but by separating themselves from the pain and accepting it, they begin to transcend the pain and create new neural pathways, enabling them to live on their own terms despite persistent symptoms.\u0027, code_slugs=[\u0027chronic-pain-neuroplasticity-memory-pain-circuits\u0027, \u0027letting-go-fighting-pain-key-to-healing\u0027]), Theme(name=\u0027Struggling with repetitive negative thoughts and learning to separate from them to reduce distress\u0027, description=\u0027Participants face distressing repetitive negative thoughts that fuel anxiety and chronic symptoms. They describe using tools like expressive writing and mindfulness to separate their identity from these thoughts, reducing physiological arousal and suffering. This process is crucial to breaking cycles of mental rigidity and anger that block healing.\u0027, code_slugs=[\u0027separation-from-negative-thoughts-in-pain\u0027]), Theme(name=\u0027Finding joy and safety as essential pathways to healing beyond pain and stress\u0027, description=\u0027Participants emphasize nurturing joy through positive experiences, relationships, and a playful curious attitude to counterbalance threat physiology. They find that embodying safety physiology by managing nervous system stress, prioritizing sleep, diet, and exercise, and interpersonal support creates a state where the body can heal itself and symptoms resolve, enabling a thriving life beyond chronic illness.\u0027, code_slugs=[\u0027nurturing-joy-for-chronic-pain-healing\u0027, \u0027importance-of-sleep-diet-exercise-in-nervous-system-calm\u0027]), Theme(name=\u0027Embracing skepticism and curiosity as starting points for holistic healing engagement\u0027, description=\u0027Participants express that embracing skepticism rather than blind belief is an important initial step. Connecting with one\u2019s doubts encourages curiosity and open-minded learning, which helps people engage in the self-directed skill acquisition needed to calm their physiology, interrupt negative cycles, and progress towards symptom improvement and healing.\u0027, code_slugs=[\u0027skepticism-as-starting-point-for-healing-engagement\u0027]), Theme(name=\u0027Understanding unconscious brain dominance in managing chronic symptoms and survival\u0027, description=\u0027Participants highlight how the unconscious brain processes millions of bits of sensory information per second to maintain survival and drive responses that the conscious brain cannot override. This explains the difficulty in controlling chronic symptoms through willpower alone, as unconscious physiological threat states dominate symptom experience and reactions.\u0027, code_slugs=[\u0027role-of-unconscious-brain-in-survival-and-pain\u0027])]\nthemes=[Theme(name=\u0027Discovering hope and healing through transformative recovery books\u0027, description=\"Participants express a profound sense of hope and inspiration upon discovering pivotal recovery books, such as Dr. John Sarno\u0027s work, that deeply resonate with their symptoms and personality traits. These books not only helped them overcome chronic pain and other health issues but also shaped their therapeutic journeys, offering an accessible entry point to understanding their complex experiences and fostering meaningful change.\", code_slugs=[\u0027book-as-key-to-chronic-pain-recovery\u0027]), Theme(name=\u0027Experiencing core healing by accessing and processing suppressed emotions\u0027, description=\u0027Participants describe their emotional healing journey centered on emotion-focused therapy, particularly ISTDP, which enables them to safely access, experience, and process suppressed emotions like anger and rage. This process reveals how physical pain manifests from blocked emotions, helping them develop new emotional capacities and gradually dismantle defense mechanisms, ultimately leading to physical and emotional relief.\u0027, code_slugs=[\u0027emotion-focused-therapy-for-pain\u0027, \u0027emotions-understood-as-physical-pain-source\u0027]), Theme(name=\u0027Facing challenges of fear and distrust in engaging deeply with therapy\u0027, description=\u0027Participants share the difficulties in engaging with intensive emotion-focused therapy, noting fears, defensive behaviors, and trust issues that create barriers. They emphasize the slow and supportive process needed to expand their emotional thresholds while avoiding setbacks, highlighting the hard work involved in gradually confronting painful emotions that are integral to recovering from chronic pain.\u0027, code_slugs=[\u0027barriers-to-therapy-engagement-and-trust\u0027]), Theme(name=\u0027Feeling validated and hopeful from growing medical recognition of pain therapy\u0027, description=\u0027Participants feel encouraged and validated as emotion-focused therapy gains acceptance among medical professionals, contrasting with earlier stigma. They describe increased doctor referrals, training opportunities, and scientific research backing, which fosters hope for broader systemic change and better integration of effective approaches into mainstream medical practice for chronic pain and related conditions.\u0027, code_slugs=[\u0027transformation-in-professional-acceptance\u0027]), Theme(name=\u0027Adapting mindset to accept therapy as essential part of physical healing\u0027, description=\u0027Participants reflect on the difficult yet crucial mental shift from viewing therapy as mere coping to recognizing it as an essential healing route. This shift involves breaking down the false divide between mental and physical health and embracing an integrated approach. They recount how this changed perspective enables them to commit more fully to emotion-focused treatments as pathways to recovery beyond just symptom management.\u0027, code_slugs=[\u0027mindset-shift-needed-for-therapy-acceptance\u0027])]\n\nProduce a single list of themes in the correct format, covering all the themes identified. Use the tools.\nAlways use the tools/JSON response.\n\n```json"
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"template_text": "You are a: {{persona}}\n\n{{research_question}}\n\nYou are at the final theme generation stage. You are provided preliminary themes, with their descriptions and relevant codes.\n\nThese preliminary themes and codes are generated from interview transcripts with participants who took part in the study.\n\nA \u0027theme\u0027 relates to the experience of participants.\n\nThemes pertain to participants. Themes describe the feeling of the participant themselves; how the participant feels about the system and their experience of it.\n\nReview and consolidate the following preliminary themes into major themes.\n\nEach major theme should be distinct from the others.\n\nThe major themes will be used to write the final report.\n\nA code can appear in multiple major themes if relevant.\nList all the relevant codes under each major theme.\n\nUse personal and domain-specific language and avoid generalized terms to generate names and descriptions of the final themes.\n\nWrite with concise, concrete details and avoid clich\u00e9s and generalizations. Avoid the word \u0027Navigating\u0027 in the names.\n\nTry to use the language the participants use when generating the names and descriptions. Directly use the language from the quotes and descriptions.\n\nWrite the final theme name in sentence case.\n\nThe name of the theme should consist of 8 to 15 words.\n\nEach final theme should have a description of 60 to 80 words and list all relevant codes.\n\nAct like an Inductive Thematic Analysis researcher would when conducting this Inductive Thematic Analysis for generating the name and descriptions of the themes.\n\nThe name of the themes are the desires, needs, and most meaningful outcomes for participants. You will be rewarded if you can complete this effectively.\n\nReview and consolidate the following preliminary themes into ~7 (+/- 2) overarching major themes. Use fewer themes if there is too much overlap.\n\nComplete list of codes identified:\n\n{{codes}}\n\nPreliminary themes:\n\n{{all_themes}}\n\nProduce a single list of themes in the correct format, covering all the themes identified. Use the tools.\n\n[[themes:themes]]",
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They emphasize learning to set personal boundaries to conserve energy and prevent relapse, underscoring the importance of positivity and self-awareness. A participant expressed, \\\"...i am going to have to make life changes ... my life is going to have to change,\\\" with hope sustained by, \\\"...i\u0027m just a very positive person ... also obstinate.\\\"\\n\\n**Embracing brain retraining and nervous system calming for symptom control and recovery**: Initial skepticism toward brain retraining shifted to acceptance as participants learned these techniques address fight or flight responses controlling symptoms. Engagement in such programs fostered empowerment and symptom improvement, exemplified by, \\\"...contacted jason and went onto his program because it actually really made sense,\\\" and, \\\"...brain and nervous system processing stress ... not sick but stressed.\\\"\\n\\n**Difficulties with genuine rest and relaxation practices essential for recovery**: Participants struggled to attain authentic rest and relaxation, such as meditation or naps, often due to ingrained mental resistance. Yet, they recognized this as transformative for managing fatigue, sharing, \\\"...i\u0027m not good at relaxing ... people say do meditation ... i just struggled with it,\\\" and, \\\"...now i make myself every day lay down and take a nap or do some meditation.\\\"\\n\\n**Emotional struggle from social misunderstandings requiring boundaries to protect well-being**: Frustrations arose when participants felt their illness was misunderstood or minimized by others, eliciting anger and emotional distress. To safeguard mental health, they described setting emotional boundaries around symptom discussions and social interactions, as expressed, \\\"when people say silly things sometimes ... i can flare up,\\\" and, \\\"...have boundaries ... not talking about old symptoms.\\\"\\n\\n**Valuing holistic recovery over symptom-specific treatments to foster comprehensive healing**: Participants highlighted that focusing solely on symptom management offered only temporary relief, often leading to frustration. Instead, adopting a holistic approach supporting overall body health facilitated more meaningful recovery. One remarked, \\\"...recovery ended up being not about focusing on symptoms but on supporting my body as a whole...,\\\" contrasted with, \\\"...spent thousands of hours googling symptoms...\\\"\\n\\n**Recognizing the need for personalized recovery plans tailored to unique illness journeys**: Participants underscored the importance of customizing recovery strategies to individual symptoms, lifestyles, and experiences. They noted that pacing and treatments must be flexible for effectiveness, stating, \\\"...somebody\u0027s recovery plan ... needs to be tailored...\\\"\\n\\n**Deep gratitude for renewed life and profound relationship changes after illness recovery**: Upon recovery, participants expressed awe and gratitude for life, describing themselves as, \\\"a walking miracle,\\\" while acknowledging difficulties reconnecting with healthy peers. One shared, \\\"...i have to catch myself and be like you are a walking miracle like this is incredible,\\\" and another noted challenges, \\\"...friends who\u0027ve never been through it ... complain about their lives ... detachment.\\\"\\n\\n**Challenge and resilience through medical misdiagnosis prompting strong self-advocacy**: Participants recounted frustration with delayed or incorrect diagnoses, prompting active engagement in healthcare research and specialist consultation. This self-advocacy was vital for accessing appropriate treatments, illustrated by, \\\"...diagnosed with fibromyalgia ignoring fatigue... no treatment for many years...,\\\" and, \\\"...researching doctors as much as i could ... moved to get better care...\\\"\\n\\n**Undertaking drastic lifestyle changes including diet, movement, and toxin avoidance for healing**: Participants committed to major changes such as elimination diets, gentle movement rehabilitation, and toxin reduction. Overcoming challenges like sugar addiction was critical to recovery, as one related, \\\"Sugar was a massive one ... clearly had physical addiction...,\\\" with rehabilitation described, \\\"...gradually increase ability to move ... one to two minutes a day initially...\\\"\\n\\n**Transforming through psychological growth, spiritual awakening, and enhanced self-expression**: Chronic illness fostered profound psychological and spiritual development including humility, acceptance, and authentic communication skills. While spiritual experiences sometimes destabilized daily life, they contributed significantly to healing. Participants reflected, \\\"It humbled me ... changed me ... i wouldn\u0027t say i had spirituality before,\\\" and, \\\"...spiritual awakening.\\\"\\n\\n**Managing anxiety related to pregnancy symptoms with self-compassion and cautious optimism**: Participants described fear interpreting pregnancy symptoms amid potential illness relapse, learning to differentiate normal pregnancy experiences with self-compassion and hope, exemplified by, \\\"I keep reminding myself these are normal symptoms... fatigue or relapse?\\\"\\n\\n**Inspired hope and community support from witnessing others\u0027 recoveries**: Observing others\u0027 improvements and engaging with supportive communities provided critical hope and motivation, combating isolation. One participant noted, \\\"...so nice to see many people getting past these things,\\\" and, \\\"...people start reaching out to me, i recovered as well...\\\"\\n\\n**Early illness shock and isolation amidst misunderstood symptoms and lack of diagnosis**: The onset of chronic illness was described as frightening and confusing, compounded by isolation and misdiagnosis, often being mislabeled as depression, deepening loneliness. A participant recalled, \\\"...felt a bit fluy felt a bit strange felt a bit scared because it felt really weird,\\\" and, \\\"one of the first doctors said she just thought i was depressed.\\\"\\n\\n**Desperation fuels trial of varied alternative therapies seeking relief and recovery**: Participants\u0027 urgency and hope led to trying diverse complementary therapies such as acupuncture and reiki, though success varied, as shared, \\\"...went for reiki and this and that,\\\" and, \\\"...flew to america to work with healer.\\\"\\n\\n**Unlocking healing by addressing suppressed anger, trauma, and mind-body connections**: Recognizing unresolved anger and trauma as roots of physical symptoms was transformative. Participants linked symptoms to emotional blocks and employed mind-body approaches for relief, as described, \\\"...had suppressed anger and unresolved trauma in my system,\\\" and, \\\"...impact of trauma on my system manifesting physically like a freeze response.\\\"\\n\\n**Engaging in emotion-focused therapy to safely process difficult emotions underlying pain**: Intensive therapies like ISTDP enabled participants to confront suppressed emotions such as anger contributing to chronic pain, despite initial fear, facilitating healing. They noted, \\\"...core intervention is emotion focused approach ... all emotions healthy,\\\" and, \\\"...therapy helps notice bodily tension often anxiety about anger or rage.\\\"\\n\\n**Gaining validation and hope from medical acceptance and evolving pain recovery treatments**: Growing medical recognition of emotion-focused therapies provided participants with validation and optimism, enhancing trust in recovery pathways, observed in, \\\"...most folks come because they accept this approach,\\\" and, \\\"...training doctors in local hospital ... growing recognition.\\\"\\n\\n**Adapting mindset to accept therapy as an integral part of chronic illness recovery**: Participants emphasized the importance of shifting from viewing therapy as mere coping to embracing it as essential for recovery, integrating mental and physical health perspectives. As one expressed, \\\"...mental health and physical health often thought separate,\\\" and, \\\"...therapy seen as coping not to get better initially.\\\"\\n\\n**Living with chronic symptoms involves acceptance and developing tools to manage setbacks**: Recovery is seen as ongoing management requiring acceptance of symptom fluctuations and use of coping strategies. Empowering self-talk and encouragement helped maintain progress, illustrated by, \\\"...it\u0027s a journey rather than a stuck state...,\\\" and, \\\"...great having someone who believes in you that much...\\\"\\n\\n**Experiencing isolation and frustration from long COVID and desire for empathy and validation**: Participants with long COVID described enduring fatigue and social isolation, emphasizing a profound need for empathetic understanding to alleviate stigma and loneliness, shared as, \\\"...feel drained all the time ... used to be active now barely manage walk...,\\\" and, \\\"...validation would mean the world ... proves not making this up...\\\"\\n\\n**Yearning to regain physical energy and normal functioning to reclaim identity**: There was a strong desire to restore energy and resume daily activities, intimately tied to coping with identity shifts wrought by chronic illness. A participant noted, \\\"...if i could get some energy back ... feel like myself,\\\" while another said, \\\"...don\u2019t recognize person i am now compared to before...\\\"\\n\\n**Struggling with medical uncertainty and frustration over normal test results despite symptoms**: Participants experienced confusion and self-doubt when medical tests showed normal results despite severe symptoms, sometimes questioning mental health origins, exemplified by, \\\"...multiple doctors said everything was perfectly fine ...,\\\" and, \\\"...thought maybe something mentally causing this.\\\"\\n\\n**Understanding chronic pain as a brain-embedded survival response requiring acceptance**: Pain was framed as a permanent neural memory in brain circuits influenced by fight or flight physiology. Acceptance and separation from pain, rather than fighting it, were pivotal for symptom reduction, reflected in, \\\"...pain circuits absolutely permanent like phantom limb pain,\\\" and, \\\"...hardest part is people can\u0027t help but try to fix themselves.\\\"\\n\\n**Breaking free from negative thought cycles to reduce pain and emotional distress**: Participants described how separating their identity from intrusive negative thoughts through therapies diminished anxiety and symptom exacerbation by calming physiological arousal, noting, \\\"...separate from the thoughts that\u0027s where behavior therapy comes into play.\\\"\\n\\n**Cultivating joy, safety, and health habits to counteract chronic stress and support healing**: Joyful experiences, supportive relationships, and lifestyle habits like healthy sleep, diet, and exercise were vital for nervous system calming and fostering healing, as shared, \\\"...nurture joy if you\u2019re fighting stress not possible,\\\" and, \\\"...address sleep is number one...\\\"\\n\\n**Discovering hope and new perspectives through transformational recovery literature**: Influential books offering mind-body explanations for chronic pain inspired hope and therapeutic career paths, serving as anchors in recovery, illustrated by, \\\"...book by john sono ... back pain gone ... health problems went away,\\\" and, \\\"...personality characteristics true for me and most clients.\\\"\"}",
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"output": "**Experiencing relentless fatigue and energy crashes leading to debilitating daily function loss**: Participants describe profound exhaustion triggered by minimal activity such as standing, resulting in complete energy depletion necessitating prolonged bed rest and inability to perform basic tasks. This fatigue often worsens through cycles of overexertion and relapse, severely disrupting daily life and independence. For instance, one shared, \"...the minute i stood up i just couldn\u0027t do anything i just drained of energy completely,\" and another noted, \"...walking like ten miles every day ... i picked up a couple of viruses ... can\u0027t get out of bed.\"\n\n**Struggling with chronic illness limits while maintaining hope and adjusting lifestyle**: Participants confront the challenge of accepting the chronic nature of their illness while preserving hope and adapting their lifestyles. They emphasize learning to set personal boundaries to conserve energy and prevent relapse, underscoring the importance of positivity and self-awareness. A participant expressed, \"...i am going to have to make life changes ... my life is going to have to change,\" with hope sustained by, \"...i\u0027m just a very positive person ... also obstinate.\"\n\n**Embracing brain retraining and nervous system calming for symptom control and recovery**: Initial skepticism toward brain retraining shifted to acceptance as participants learned these techniques address fight or flight responses controlling symptoms. Engagement in such programs fostered empowerment and symptom improvement, exemplified by, \"...contacted jason and went onto his program because it actually really made sense,\" and, \"...brain and nervous system processing stress ... not sick but stressed.\"\n\n**Difficulties with genuine rest and relaxation practices essential for recovery**: Participants struggled to attain authentic rest and relaxation, such as meditation or naps, often due to ingrained mental resistance. Yet, they recognized this as transformative for managing fatigue, sharing, \"...i\u0027m not good at relaxing ... people say do meditation ... i just struggled with it,\" and, \"...now i make myself every day lay down and take a nap or do some meditation.\"\n\n**Emotional struggle from social misunderstandings requiring boundaries to protect well-being**: Frustrations arose when participants felt their illness was misunderstood or minimized by others, eliciting anger and emotional distress. To safeguard mental health, they described setting emotional boundaries around symptom discussions and social interactions, as expressed, \"when people say silly things sometimes ... i can flare up,\" and, \"...have boundaries ... not talking about old symptoms.\"\n\n**Valuing holistic recovery over symptom-specific treatments to foster comprehensive healing**: Participants highlighted that focusing solely on symptom management offered only temporary relief, often leading to frustration. Instead, adopting a holistic approach supporting overall body health facilitated more meaningful recovery. One remarked, \"...recovery ended up being not about focusing on symptoms but on supporting my body as a whole...,\" contrasted with, \"...spent thousands of hours googling symptoms...\"\n\n**Recognizing the need for personalized recovery plans tailored to unique illness journeys**: Participants underscored the importance of customizing recovery strategies to individual symptoms, lifestyles, and experiences. They noted that pacing and treatments must be flexible for effectiveness, stating, \"...somebody\u0027s recovery plan ... needs to be tailored...\"\n\n**Deep gratitude for renewed life and profound relationship changes after illness recovery**: Upon recovery, participants expressed awe and gratitude for life, describing themselves as, \"a walking miracle,\" while acknowledging difficulties reconnecting with healthy peers. One shared, \"...i have to catch myself and be like you are a walking miracle like this is incredible,\" and another noted challenges, \"...friends who\u0027ve never been through it ... complain about their lives ... detachment.\"\n\n**Challenge and resilience through medical misdiagnosis prompting strong self-advocacy**: Participants recounted frustration with delayed or incorrect diagnoses, prompting active engagement in healthcare research and specialist consultation. This self-advocacy was vital for accessing appropriate treatments, illustrated by, \"...diagnosed with fibromyalgia ignoring fatigue... no treatment for many years...,\" and, \"...researching doctors as much as i could ... moved to get better care...\"\n\n**Undertaking drastic lifestyle changes including diet, movement, and toxin avoidance for healing**: Participants committed to major changes such as elimination diets, gentle movement rehabilitation, and toxin reduction. Overcoming challenges like sugar addiction was critical to recovery, as one related, \"Sugar was a massive one ... clearly had physical addiction...,\" with rehabilitation described, \"...gradually increase ability to move ... one to two minutes a day initially...\"\n\n**Transforming through psychological growth, spiritual awakening, and enhanced self-expression**: Chronic illness fostered profound psychological and spiritual development including humility, acceptance, and authentic communication skills. While spiritual experiences sometimes destabilized daily life, they contributed significantly to healing. Participants reflected, \"It humbled me ... changed me ... i wouldn\u0027t say i had spirituality before,\" and, \"...spiritual awakening.\"\n\n**Managing anxiety related to pregnancy symptoms with self-compassion and cautious optimism**: Participants described fear interpreting pregnancy symptoms amid potential illness relapse, learning to differentiate normal pregnancy experiences with self-compassion and hope, exemplified by, \"I keep reminding myself these are normal symptoms... fatigue or relapse?\"\n\n**Inspired hope and community support from witnessing others\u0027 recoveries**: Observing others\u0027 improvements and engaging with supportive communities provided critical hope and motivation, combating isolation. One participant noted, \"...so nice to see many people getting past these things,\" and, \"...people start reaching out to me, i recovered as well...\"\n\n**Early illness shock and isolation amidst misunderstood symptoms and lack of diagnosis**: The onset of chronic illness was described as frightening and confusing, compounded by isolation and misdiagnosis, often being mislabeled as depression, deepening loneliness. A participant recalled, \"...felt a bit fluy felt a bit strange felt a bit scared because it felt really weird,\" and, \"one of the first doctors said she just thought i was depressed.\"\n\n**Desperation fuels trial of varied alternative therapies seeking relief and recovery**: Participants\u0027 urgency and hope led to trying diverse complementary therapies such as acupuncture and reiki, though success varied, as shared, \"...went for reiki and this and that,\" and, \"...flew to america to work with healer.\"\n\n**Unlocking healing by addressing suppressed anger, trauma, and mind-body connections**: Recognizing unresolved anger and trauma as roots of physical symptoms was transformative. Participants linked symptoms to emotional blocks and employed mind-body approaches for relief, as described, \"...had suppressed anger and unresolved trauma in my system,\" and, \"...impact of trauma on my system manifesting physically like a freeze response.\"\n\n**Engaging in emotion-focused therapy to safely process difficult emotions underlying pain**: Intensive therapies like ISTDP enabled participants to confront suppressed emotions such as anger contributing to chronic pain, despite initial fear, facilitating healing. They noted, \"...core intervention is emotion focused approach ... all emotions healthy,\" and, \"...therapy helps notice bodily tension often anxiety about anger or rage.\"\n\n**Gaining validation and hope from medical acceptance and evolving pain recovery treatments**: Growing medical recognition of emotion-focused therapies provided participants with validation and optimism, enhancing trust in recovery pathways, observed in, \"...most folks come because they accept this approach,\" and, \"...training doctors in local hospital ... growing recognition.\"\n\n**Adapting mindset to accept therapy as an integral part of chronic illness recovery**: Participants emphasized the importance of shifting from viewing therapy as mere coping to embracing it as essential for recovery, integrating mental and physical health perspectives. As one expressed, \"...mental health and physical health often thought separate,\" and, \"...therapy seen as coping not to get better initially.\"\n\n**Living with chronic symptoms involves acceptance and developing tools to manage setbacks**: Recovery is seen as ongoing management requiring acceptance of symptom fluctuations and use of coping strategies. Empowering self-talk and encouragement helped maintain progress, illustrated by, \"...it\u0027s a journey rather than a stuck state...,\" and, \"...great having someone who believes in you that much...\"\n\n**Experiencing isolation and frustration from long COVID and desire for empathy and validation**: Participants with long COVID described enduring fatigue and social isolation, emphasizing a profound need for empathetic understanding to alleviate stigma and loneliness, shared as, \"...feel drained all the time ... used to be active now barely manage walk...,\" and, \"...validation would mean the world ... proves not making this up...\"\n\n**Yearning to regain physical energy and normal functioning to reclaim identity**: There was a strong desire to restore energy and resume daily activities, intimately tied to coping with identity shifts wrought by chronic illness. A participant noted, \"...if i could get some energy back ... feel like myself,\" while another said, \"...don\u2019t recognize person i am now compared to before...\"\n\n**Struggling with medical uncertainty and frustration over normal test results despite symptoms**: Participants experienced confusion and self-doubt when medical tests showed normal results despite severe symptoms, sometimes questioning mental health origins, exemplified by, \"...multiple doctors said everything was perfectly fine ...,\" and, \"...thought maybe something mentally causing this.\"\n\n**Understanding chronic pain as a brain-embedded survival response requiring acceptance**: Pain was framed as a permanent neural memory in brain circuits influenced by fight or flight physiology. Acceptance and separation from pain, rather than fighting it, were pivotal for symptom reduction, reflected in, \"...pain circuits absolutely permanent like phantom limb pain,\" and, \"...hardest part is people can\u0027t help but try to fix themselves.\"\n\n**Breaking free from negative thought cycles to reduce pain and emotional distress**: Participants described how separating their identity from intrusive negative thoughts through therapies diminished anxiety and symptom exacerbation by calming physiological arousal, noting, \"...separate from the thoughts that\u0027s where behavior therapy comes into play.\"\n\n**Cultivating joy, safety, and health habits to counteract chronic stress and support healing**: Joyful experiences, supportive relationships, and lifestyle habits like healthy sleep, diet, and exercise were vital for nervous system calming and fostering healing, as shared, \"...nurture joy if you\u2019re fighting stress not possible,\" and, \"...address sleep is number one...\"\n\n**Discovering hope and new perspectives through transformational recovery literature**: Influential books offering mind-body explanations for chronic pain inspired hope and therapeutic career paths, serving as anchors in recovery, illustrated by, \"...book by john sono ... back pain gone ... health problems went away,\" and, \"...personality characteristics true for me and most clients.\"",
"prompt": "Results of a thematic analysis:\n\n## CODES\n\ncodenotes: Codes to keep for final CodeList:\n- Persistent fatigue and energy drain on standing\n- Overexertion leading to relapse and worsening symptoms\n- Relentless pushing through fatigue despite physical limits\n- Realization and acceptance of necessary lifestyle changes\n- Embracing brain retraining as a key to recovery\n- Learning to set boundaries to manage energy and avoid overcommitment\n- Difficulty with relaxation and understanding true rest\n- Frustration and occasional anger toward others\u2019 misunderstanding of illness\n- Maintaining hope and positivity despite chronic illness challenges\n- Developing self-awareness to avoid overexertion and manage symptoms\n- Focusing on holistic recovery instead of individual symptoms\n- Desire for symptom comparison but finding it unhelpful\n- Using symptom management mainly for comfort rather than recovery\n- Need to tailor recovery plans individually to each person\u0027s lifestyle and journey\n- Frustration and disappointment from focusing on symptom-specific fixes\n- Setting emotional boundaries around discussing past symptoms\n- Walking miracle gratitude for life after chronic illness\n- Difficulty relating to healthy friends post illness\n- Frustration with delayed diagnosis and misdiagnosis\n- Self advocacy and research to access better healthcare\n- Discovery and treatment of genetic mitochondrial disease\n- Drastic lifestyle changes including diet and environment for recovery\n- Overcoming intense sugar addiction to support healing\n- Movement therapy as gentle rehabilitation rather than exercise\n- Psychological impact and personal growth from chronic illness experience\n- Fear and anxiety about pregnancy symptoms being illness relapse\n- Hope and positivity through seeing others recover from chronic illness\n- Self empowerment through knowledge acquisition and faith in recovery\n- Scary and confusing early illness experience\n- Feeling isolated due to illness\n- Rejection of depression diagnosis and emotional awareness\n- Hope from meditation and yoga practices\n- Desperation leads to trying various alternative therapies\n- Realization of suppressed anger and unresolved trauma\n- Mind-body connection and trauma understanding\n- Learning authentic self-expression and setting boundaries\n- Spiritual experience as part of healing journey\n- Ongoing self-care and regulation post recovery\n- Career shift driven by healing experience\n- Recognizing familial and ancestral trauma impact on health\n- Trauma leading to sudden health crisis and exhaustion\n- Fear and uncertainty following chronic fatigue syndrome diagnosis\n- Resentment towards restrictive diets imposed in treatment\n- Regaining personal agency and control in healing journey\n- Experiencing mental peace while symptoms persist\n- Adopting brain and nervous system explanation for ME/CFS symptoms\n- Cultivating self-compassion to manage symptoms and aid recovery\n- Role of personality traits like perfectionism in illness experience\n- Acknowledging and processing emotions as key to recovery\n- Finding validation and hope through empathetic connection\n- Energy loss and fatigue reducing daily activity\n- Frustration from inconclusive medical investigations\n- Initial skepticism towards brain retraining techniques\n- Importance of mental stamina for physical activity recovery\n- Valuing supportive and personal encouragement during recovery\n- Developing empowering self-statements to combat anxiety\n- Recognizing recovery as a journey, not a fixed state\n- Feeling frustrated and isolated due to long COVID limitations\n- Desire for understanding and validation from others\n- Need to regain physical energy and return to normal function\n- Search for effective treatment and cures for symptom relief\n- Coping with changes to identity and sense of self\n- Anger as fight or flight physiology driving chronic pain\n- Chronic pain as embedded memory in neuroplastic pain circuits\n- Unconscious brain drives survival responses and chronic symptoms\n- Letting go of fighting pain as crucial to healing process\n- Threat physiology underlies chronic mental and physical symptoms\n- Separating oneself from negative and repetitive thoughts\n- Nurturing joy as a vital part of healing journey\n- Importance of sleep diet and exercise for calming nervous system\n- Physiology\u0027s dominance over conscious brain in symptom experience\n- Using skepticism as a starting point to engage in healing\n- Book as key to chronic pain recovery approach\n- Emotion-focused therapy as core to pain recovery process\n- Barriers to engaging with emotion-focused therapy include fear and trust issues\n- Growing acceptance of emotion-focused therapy among medical professionals\n- Mindset shift required for accepting therapy as part of recovery\n- Understanding emotions as the source of physical pain\n\ncodes: codes=[Code(slug=\u0027persistent-fatigue-energy\u0027, name=\u0027Persistent fatigue and energy drain on standing\u0027, description=\u0027Participant describes extreme exhaustion and complete energy drain when standing after lying down, causing prolonged bedbound state and lasting impact on daily functioning.\u0027, quotes=[\"\u0027...the minute i stood up i just couldn\u0027t do anything i just drained of energy completely\u0027\", \"\u0027...always tired constantly tired\u0027\"]), Code(slug=\u0027overexertion-relapse-cycle\u0027, name=\u0027Overexertion leading to relapse and worsening symptoms\u0027, description=\u0027Participant explains the cycle of pushing beyond limits, subsequent virus contraction, and severe relapse, resulting in retirement and major activity limitations.\u0027, quotes=[\"\u0027...walking like ten miles every day ... i picked up a couple of viruses ... can\u0027t get out of bed\u0027\", \"\u0027...had to retire at that stage ... kept pushing myself\u0027\"]), Code(slug=\u0027pushing-through-fatigue\u0027, name=\u0027Relentless pushing through fatigue despite physical limits\u0027, description=\u0027Despite exhaustion and inability to perform simple tasks, participant continually pushed themselves to walk and exercise daily, worsening energy depletion.\u0027, quotes=[\"\u0027i wouldn\u0027t let myself not go ... i\u0027d wake up at five o\u0027clock ... just went walking\u0027\", \"\u0027then i couldn\u0027t do anything for myself ... had to lie down because no energy to cook\u0027\"]), Code(slug=\u0027acceptance-lifestyle-changes\u0027, name=\u0027Realization and acceptance of necessary lifestyle changes\u0027, description=\u0027Participant initially in denial later recognized the need for significant lifestyle changes to manage illness instead of hoping to return to previous activity levels.\u0027, quotes=[\"\u0027...i am going to have to make life changes ... my life is going to have to change\u0027\", \"\u0027part of it was just ignorance be part of it\u0027\"]), Code(slug=\u0027brain-retraining-recovery\u0027, name=\u0027Embracing brain retraining as a key to recovery\u0027, description=\"Skepticism about brain retraining shifted to acceptance after learning it addresses protective responses and mental \u0027fight or flight\u0027 state, leading to program participation and positive results.\", quotes=[\"\u0027...when he explaining ... your body has switched down some of the genes ... fight too much ... made sense\u0027\", \"\u0027...contacted jason and went onto his program because it actually really made sense\u0027\"]), Code(slug=\u0027setting-boundaries-energy\u0027, name=\u0027Learning to set boundaries to manage energy and avoid overcommitment\u0027, description=\u0027Participant emphasizes importance of personal boundaries like letting calls go to voicemail to prevent energy drain and managing social demands by self-monitoring exhaustion.\u0027, quotes=[\"\u0027if my phone rings i let it go to voicemail so i can deal with it when i want to\u0027\", \"\u0027learning boundaries the hardest for me was learning boundaries\u0027\"]), Code(slug=\u0027difficulty-relaxing-rest\u0027, name=\u0027Difficulty with relaxation and understanding true rest\u0027, description=\"Participant struggles with relaxation practices like meditation and needs to relearn the concept and practice of \u0027real rest\u0027 familiar to healthy individuals but hard for her to implement.\", quotes=[\"\u0027...i\u0027m not good at relaxing ... people say do meditation ... i just struggled with it\u0027\", \"\u0027...now i make myself every day lay down and take a nap or do some meditation\u0027\"]), Code(slug=\u0027anger-misunderstanding-others\u0027, name=\u0027Frustration and occasional anger toward others\u2019 misunderstanding of illness\u0027, description=\u0027Participant feels annoyance and flares when others minimize or misunderstand her illness or recovery, particularly those who never had the illness or pass unfair judgment, showing emotional toll of misunderstanding.\u0027, quotes=[\"\u0027when people say silly things sometimes ... i can flare up\u0027\", \"\u0027...when somebody minimizes it you can think no\u0027\"]), Code(slug=\u0027hope-positivity-chronic-illness\u0027, name=\u0027Maintaining hope and positivity despite chronic illness challenges\u0027, description=\u0027Participant\u2019s positive and obstinate personality is key to refusing acceptance of permanent disability and sustaining belief in recovery and improvement despite long-term severe illness.\u0027, quotes=[\"\u0027...i\u0027m just a very positive person ... also obstinate\u0027\", \"\u0027never ever felt ... i was almost like in denial\u0027\"]), Code(slug=\u0027self-awareness-overexertion\u0027, name=\u0027Developing self-awareness to avoid overexertion and manage symptoms\u0027, description=\u0027Participant stresses importance of listening to body, recognizing triggers, and adjusting activities timely to prevent relapse and maintain health improvements.\u0027, quotes=[\"\u0027...i\u0027ve learnt to listen to myself listen to my body ... work out what my triggers are\u0027\", \"\u0027i can stop myself before i actually get to the stage where i\u0027m really pushing boundaries\u0027\"]), Code(slug=\u0027holistic-recovery-focus\u0027, name=\u0027Focusing on holistic recovery instead of individual symptoms\u0027, description=\u0027Participants emphasize prioritizing overall body support and holistic healing in managing ME/CFS rather than treating isolated symptoms, which was overwhelming and ineffective, whereas holistic approach contributed to gradual recovery.\u0027, quotes=[\"\u0027...recovery ended up being not about focusing on symptoms but on supporting my body as a whole...\u0027\", \"\u0027...as i slowly improved overall my symptoms slowly decreased...\u0027\"]), Code(slug=\u0027symptom-comparison-limit\u0027, name=\u0027Desire for symptom comparison but finding it unhelpful\u0027, description=\u0027Participants want to compare symptoms for reassurance but find it unhelpful or misleading due to wide symptom variation among individuals, making direct comparison counterproductive.\u0027, quotes=[\"\u0027...people want to compare their symptoms against mine... to see if we\u0027re the same...\u0027\", \"\u0027...don\u0027t get too caught up on comparing symptoms...\u0027\"]), Code(slug=\u0027symptom-management-palliation\u0027, name=\u0027Using symptom management mainly for comfort rather than recovery\u0027, description=\u0027Symptom management is described as largely palliative to ease discomfort, with treatments alleviating suffering temporarily but not addressing underlying illness, which needs broader healing strategies.\u0027, quotes=[\"\u0027...symptom management that i did was more palliative not about recovery...\u0027\", \"\u0027...if i had pain i might take painkillers or see doctor for sedatives...\u0027\"]), Code(slug=\u0027personalized-recovery-plans\u0027, name=\"Need to tailor recovery plans individually to person\u0027s lifestyle and journey\", description=\"Participants highlight importance of personalized recovery plans adapted to individual\u0027s unique symptoms, lifestyle and disease experience, as pacing and treatments vary between individuals.\", quotes=[\"\u0027...somebody\u0027s recovery plan ... needs to be tailored...\u0027\", \"\u0027...pacing has to be tailored individually because their life is so different...\u0027\"]), Code(slug=\u0027frustration-symptom-fix\u0027, name=\u0027Frustration and disappointment from focusing on symptom-specific fixes\u0027, description=\u0027Participants report desperation and disillusionment from searching for symptom fixes, spending extensive time and money on treatments without holistic healing, leading to emotional exhaustion and need for alternative strategies.\u0027, quotes=[\"\u0027...spent thousands of hours googling symptoms...\u0027, \u0027...almost poisoning myself by buying organic elderberries...\u0027\", \"\u0027...needed a more comprehensive strategy rather than symptom by symptom fixes...\u0027\"]), Code(slug=\u0027emotional-boundaries-symptoms\u0027, name=\u0027Setting emotional boundaries around discussing past symptoms\u0027, description=\u0027Participants set limits on discussing past symptoms and one-on-one symptom troubleshooting to avoid trauma and overwhelm, preserving well-being while sharing recovery stories positively.\u0027, quotes=[\"\u0027...have boundaries ... not talking about old symptoms ...\u0027\", \"\u0027...writing my story took forever because it\u0027s traumatizing going back...\u0027\"]), Code(slug=\u0027walking-miracle-gratitude\u0027, name=\u0027Walking miracle gratitude for life after chronic illness\u0027, description=\u0027Participant expresses deep appreciation for recovering to a life once only dreamed of, enjoying life with childlike wonder and daily gratitude despite occasional setbacks.\u0027, quotes=[\"\u0027...i have to catch myself and be like you are a walking miracle like this is incredible\u0027\", \"\u0027It\u0027s like being like when you watch a six year old wandering...\u0027\"]), Code(slug=\u0027difficulty-relating-healthy\u0027, name=\u0027Difficulty relating to healthy friends post illness\u0027, description=\u0027Participant struggles maintaining friendships with healthy friends who complain or take health for granted, experiencing detachment and missing activities like working out.\u0027, quotes=[\"\u0027...friends who\u0027ve never been through it ... complain about their lives ... detachment\u0027\", \"\u0027...i really struggle with people who seem physically able but choose not to...\u0027\"]), Code(slug=\u0027diagnosis-delay-misdiagnosis\u0027, name=\u0027Frustration with delayed diagnosis and misdiagnosis\u0027, description=\"Participant recounts initial fibromyalgia diagnosis ignoring fatigue, leading to delayed appropriate diagnosis and frustration with medical system\u0027s lack of understanding and care.\", quotes=[\"\u0027...diagnosed with fibromyalgia ignoring fatigue... no treatment for many years...\u0027\", \"\u0027It took a while before chronic fatigue diagnosis...\u0027\"]), Code(slug=\u0027self-advocacy-healthcare\u0027, name=\u0027Self advocacy and research to access better healthcare\u0027, description=\u0027Participant actively researched and managed health, connecting with knowledgeable providers who identified underlying infections, aiding diagnosis and treatment.\u0027, quotes=[\"\u0027...researching doctors as much as i could ... moved to get better care...\u0027\", \"\u0027...linked with doctors testing underlying infections...\u0027\"]), Code(slug=\u0027genetic-mitochondrial-treatment\u0027, name=\u0027Discovery and treatment of genetic mitochondrial disease\u0027, description=\u0027Diagnosis of mitochondrial DNA depletion syndrome explained infections and fatigue; treatment focused on mitochondrial support helped regain strength and combat infections, marking recovery progress.\u0027, quotes=[\"\u0027...mitochondrial disease called mitochondrial dna depletion syndrome...\u0027\", \"\u0027...put on cocktail to boost mitochondria and fight infections...\u0027\"]), Code(slug=\u0027drastic-lifestyle-changes\u0027, name=\u0027Drastic lifestyle changes including diet and environment for recovery\u0027, description=\u0027Significant lifestyle changes like elimination diet, gradual movement rehab, and removing toxins were key to healing, with dietary modifications reducing inflammation and aiding recovery.\u0027, quotes=[\"\u0027...dramatically change diet using food as medicine...\u0027\", \"\u0027...removed toxic ingredients and used water filtration...\u0027\"]), Code(slug=\u0027overcoming-sugar-addiction\u0027, name=\u0027Overcoming intense sugar addiction to support healing\u0027, description=\u0027Participant overcame physical sugar addiction disrupting health and sleep through gut healing and probiotics, resulting in diminished cravings and healthier eating habits.\u0027, quotes=[\"\u0027Sugar was a massive one ... clearly had physical addiction...\u0027\", \"\u0027...up in middle of night every night and eat sugar\u0027\"]), Code(slug=\u0027movement-therapy-gentle-rehab\u0027, name=\u0027Movement therapy as gentle rehabilitation rather than exercise\u0027, description=\u0027Participant emphasizes very gradual, gentle movement for rehabilitation rather than typical exercise, balancing activity with rest to avoid relapse.\u0027, quotes=[\"\u0027...gradually increase ability to move ... one to two minutes a day initially...\u0027\", \"\u0027...couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed...\u0027\"]), Code(slug=\u0027psychological-growth-illness\u0027, name=\u0027Psychological impact and personal growth from chronic illness experience\u0027, description=\u0027Participant reflects on how illness changed identity, values, spirituality, fostering humility, acceptance, spiritual growth, gratitude and deeper appreciation for life and relationships.\u0027, quotes=[\"\u0027It humbled me ... changed me ... i wouldn\u0027t say i had spirituality before\u0027\", \"\u0027...illness catapults our growth and puts us in a better direction\u0027\"]), Code(slug=\u0027pregnancy-anxiety-relapse\u0027, name=\u0027Fear and anxiety about pregnancy symptoms being illness relapse\u0027, description=\u0027Participant describes anxiety and uncertainty distinguishing pregnancy symptoms from illness relapse, learning self-compassion and cautious optimism about health journey.\u0027, quotes=[\"\u0027I keep reminding myself these are normal symptoms... fatigue or relapse?\u0027\", \"\u0027...normal to have headaches when pregnant, normal to feel tired...\u0027\"]), Code(slug=\u0027hope-positivity-others-recover\u0027, name=\u0027Hope and positivity through seeing others recover from chronic illness\u0027, description=\u0027Participant gains essential hope and motivation by seeing recovery stories, highlighting importance of community and shared experience to sustain perseverance through chronic illness.\u0027, quotes=[\"\u0027...so nice to see many people getting past these things\u0027\", \"\u0027...people start reaching out to me, i recovered as well...\u0027\"]), Code(slug=\u0027self-empowerment-knowledge-faith\u0027, name=\u0027Self empowerment through knowledge acquisition and faith in recovery\u0027, description=\u0027Participant credits self-education on illness combined with spiritual trust and faith as key to recovery, emphasizing trust in healing process and rejection of limiting prognoses.\u0027, quotes=[\"\u0027...had to go through years of research and learning\u0027\", \"\u0027It was like getting a bachelor\u2019s degree in chronic illness\u0027\"]), Code(slug=\u0027scary-confusing-early-illness\u0027, name=\u0027Scary and confusing early illness experience\u0027, description=\u0027Participant describes onset of chronic fatigue as frightening and confusing, with overwhelming health decline requiring university leave and grieving process.\u0027, quotes=[\"\u0027...felt a bit fluy felt a bit strange felt a bit scared because it felt really weird\u0027\", \"\u0027...didn\u0027t know what was going on ... really scary time\u0027\"]), Code(slug=\u0027feeling-isolated-illness\u0027, name=\u0027Feeling isolated due to illness\u0027, description=\u0027Participant felt lonely after returning home separated from university friends, relying primarily on family for support during tough times.\u0027, quotes=[\"\u0027...all my friends from home had gone to university ... didn\u0027t really have anyone other than family\u0027\", \"\u0027...it was a very tough time\u0027\"]), Code(slug=\u0027reject-depression-diagnosis\u0027, name=\u0027Rejection of depression diagnosis and emotional awareness\u0027, description=\u0027Participant rejected doctor depression diagnosis, believing deeper physical illness despite emotional challenges and depression related to illness.\u0027, quotes=[\"\u0027one of the first doctors said she just thought i was depressed\u0027\", \"\u0027i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell\u0027\"]), Code(slug=\u0027hope-meditation-yoga\u0027, name=\u0027Hope from meditation and yoga practices\u0027, description=\u0027Early meditation, yoga and breath work brought some relief and hope though benefits were sometimes temporary and inconsistent during long recovery.\u0027, quotes=[\"\u0027...perhaps meditation and yoga can help me heal\u0027\", \"\u0027...felt different after doing alternate nostril breathing\u0027\"]), Code(slug=\u0027desperation-trying-therapies\u0027, name=\u0027Desperation leads to trying various alternative therapies\u0027, description=\u0027Participant tried multiple alternative therapies such as acupuncture, reiki, nutrition, colon hydrotherapy out of desperation, with limited or mixed success.\u0027, quotes=[\"\u0027...went for reiki and this and that\u0027\", \"\u0027...flew to america to work with healer\u0027\"]), Code(slug=\u0027suppressed-anger-trauma\u0027, name=\u0027Realization of suppressed anger and unresolved trauma\u0027, description=\u0027Participant recognized suppressed anger and trauma affecting recovery, identifying emotional blocks and unresolved feelings contributing to physical symptoms.\u0027, quotes=[\"\u0027...had suppressed anger and unresolved trauma in my system\u0027\", \"\u0027...avoiding conflict at all costs\u0027\"]), Code(slug=\u0027mindbody-trauma-understanding\u0027, name=\u0027Mind-body connection and trauma understanding\u0027, description=\u0027Participant found healing by exploring mind-body link, viewing symptoms as trauma manifestations such as freeze response, and identifying emotional triggers.\u0027, quotes=[\"\u0027...looking at symptoms ... emotion underlying this symptom\u0027\", \"\u0027...impact of trauma on my system manifesting physically like a freeze response\u0027\"]), Code(slug=\u0027authentic-self-expression\u0027, name=\u0027Learning authentic self-expression and setting boundaries\u0027, description=\u0027Recovery involved learning to express authentic emotions and needs without fear, employing communication skills to balance self-care and relationships.\u0027, quotes=[\"\u0027learning to be more myself more authentic\u0027\", \"\u0027learning non violent communication...\u0027\"]), Code(slug=\u0027spiritual-experience-healing\u0027, name=\u0027Spiritual experience as part of healing journey\u0027, description=\u0027Spiritual awakening, meditation, and mystical experiences were deep and sometimes destabilizing parts of recovery, requiring balance of spiritual insight and daily functioning.\u0027, quotes=[\"\u0027...spiritual awakening\u0027\", \"\u0027...felt like connecting with the whole universe\u0027\"]), Code(slug=\u0027ongoing-self-care-post-recovery\u0027, name=\u0027Ongoing self-care and regulation post recovery\u0027, description=\u0027Participant manages emotional and trauma symptoms post-recovery with self-regulation strategies including nature exposure and therapeutic work to maintain well-being.\u0027, quotes=[\"\u0027...periodically trauma type symptoms\u0027\", \"\u0027...go do work with a practitioner or spend night time in nature\u0027\"]), Code(slug=\u0027career-shift-healing\u0027, name=\u0027Career shift driven by healing experience\u0027, description=\u0027Healing journey influenced career towards coaching and therapeutic work, integrating personal recovery insights professionally while continuing learning and practices.\u0027, quotes=[\"\u0027...lots of therapeutic and coaching trainings\u0027\", \"\u0027...nearly twenty years working in this field\u0027\"]), Code(slug=\u0027familial-ancestral-trauma\u0027, name=\u0027Recognizing familial and ancestral trauma impact on health\u0027, description=\u0027Participant recognizes ancestral and family trauma influencing illness patterns and wider systemic generational factors contributing to chronic fatigue symptoms.\u0027, quotes=[\"\u0027...a lot of my trauma wasn\u0027t personal but was ancestral ... from family line\u0027\", \"\u0027...illness in one person might be a wider family system issue\u0027\"]), Code(slug=\u0027trauma-sudden-crisis\u0027, name=\u0027Trauma leading to sudden health crisis and exhaustion\u0027, description=\u0027Sexual assault and subsequent infection triggered severe exhaustion and ME/CFS symptoms like insomnia, brain fog and digestive issues lasting years.\u0027, quotes=[\"\u0027...sexually assaulted and that led to urinary tract infection ... system blacked out ... flu twenty four seven\u0027\", \"\u0027...digestive issues ... hot flashes even though young\u0027\"]), Code(slug=\u0027fear-uncertainty-diagnosis\u0027, name=\u0027Fear and uncertainty following chronic fatigue syndrome diagnosis\u0027, description=\u0027Diagnosis brought relief and devastating fear likened to death or life sentence with no cure, causing significant emotional distress.\u0027, quotes=[\"\u0027...so scared ... it was such a death sentence but also a life sentence\u0027\", \"\u0027...relieved to have diagnosis ... no cure\u0027\"]), Code(slug=\u0027resentment-diets-treatment\u0027, name=\u0027Resentment towards restrictive diets imposed in treatment\u0027, description=\u0027Participant resented elimination diets imposed without collaboration, feeling miserable and disempowered rather than active in the healing process.\u0027, quotes=[\"\u0027...totally miserable ... taking away anything you enjoy eating\u0027\", \"\u0027...felt it was being done to me ... perpetuating trauma\u0027\"]), Code(slug=\u0027regaining-agency-healing\u0027, name=\u0027Regaining personal agency and control in healing journey\u0027, description=\u0027Participant emphasizes reclaiming power and collaborating actively in healing process to avoid resentment and improve progress.\u0027, quotes=[\"\u0027...have to regain my agency and collaboration in healing\u0027\", \"\u0027...started realizing with diet ... otherwise i was resenting it\u0027\"]), Code(slug=\u0027mental-peace-symptoms\u0027, name=\u0027Experiencing mental peace while symptoms persist\u0027, description=\u0027Despite severe symptoms, participant achieved mental peace and nonresistance through meditation and spiritual connection, aiding emotional adaptation and recovery progress.\u0027, quotes=[\"\u0027...internal state of nonresistance or peace ... it just kind of happened\u0027\", \"\u0027...watching symptoms but felt peace\u0027\"]), Code(slug=\u0027brain-nervous-sys-fatigue\u0027, name=\u0027Adopting brain and nervous system explanation for ME/CFS symptoms\u0027, description=\u0027Learning symptoms result from brain and nervous system stress response shifted participant from helplessness to empowerment to calm nervous system and improve symptoms.\u0027, quotes=[\"\u0027...brain and nervous system processing stress ... not sick but stressed\u0027\", \"\u0027...brain generates pain fatigue because it senses danger\u0027\"]), Code(slug=\u0027self-compassion-recovery\u0027, name=\u0027Cultivating self-compassion to manage symptoms and aid recovery\u0027, description=\u0027Self-compassion reduces self-criticism that triggers stress and perpetuates symptoms, enabling emotional regulation and physical improvement.\u0027, quotes=[\"\u0027...self criticism activates danger alarm in brain ... feeds symptoms\u0027\", \"\u0027...talk to myself in a compassionate way ... what do you want right now\u0027\"]), Code(slug=\u0027personality-traits-illness\u0027, name=\u0027Role of personality traits like perfectionism in illness experience\u0027, description=\u0027Traits like perfectionism, people-pleasing, conscientiousness and emotional suppression contribute to chronic stress and symptom perpetuation through internal pressure and unexpressed emotions.\u0027, quotes=[\"\u0027perfectionist check, people pleasers check ... really conscientious\u0027\", \"\u0027holding the emotions ... like a pressure cooker\u0027\"]), Code(slug=\u0027emotional-processing-key\u0027, name=\u0027Acknowledging and processing emotions as key to recovery\u0027, description=\u0027Therapeutic practices like journaling and psychotherapy help express anger, grief and trauma, releasing emotional pressure contributing to nervous system hypervigilance and symptom worsening.\u0027, quotes=[\"\u0027...some psychotherapy was helpful ... talk through griefs\u0027\", \"\u0027...journaling your anger ... bottled up anger can be very harmful\u0027\"]), Code(slug=\u0027validation-hope-connection\u0027, name=\u0027Finding validation and hope through empathetic connection\u0027, description=\u0027Talking with someone who understood illness and brain-based mechanisms offered crucial validation and hope, triggering energy and belief in recovery.\u0027, quotes=[\"\u0027...spent three hours on phone ... finally heard the truth ... gave me hope\u0027\", \"\u0027...got up and ran around the block like never before\u0027\"]), Code(slug=\u0027energy-loss-fatigue\u0027, name=\u0027Energy loss and fatigue reducing daily activity\u0027, description=\u0027Participant experienced drop in energy and motivation, leading to extended rest periods and physical symptoms reflecting debilitating impact of CFS/long COVID.\u0027, quotes=[\"\u0027...started to get really tired ... no motivation to do activities...\u0027\", \"\u0027...laying in bed would get canker sores ... not feeling the best\u0027\"]), Code(slug=\u0027frustration-medical-tests\u0027, name=\u0027Frustration from inconclusive medical investigations\u0027, description=\u0027Participant felt uncertain and doubtful when tests showed normal despite symptoms, leading to exploration of mental health explanations and self-doubt.\u0027, quotes=[\"\u0027...multiple doctors said everything was perfectly fine ...\u0027\", \"\u0027...thought maybe something mentally causing this\u0027\"]), Code(slug=\u0027skepticism-brain-retraining\u0027, name=\u0027Initial skepticism towards brain retraining techniques\u0027, description=\u0027Participant doubted brain retraining programs at first, but upon commitment found them effective for symptom management and anxiety reduction.\u0027, quotes=[\"\u0027...program has hypnosis type of effect ... initially skeptical\u0027\", \"\u0027...committed and made a difference\u0027\"]), Code(slug=\u0027mental-stamina-recovery\u0027, name=\u0027Importance of mental stamina for physical activity recovery\u0027, description=\u0027Mental stamina and positive mindset were crucial for progressing from basic function to running a 10k and training for a marathon, highlighting mental role in physical recovery.\u0027, quotes=[\"\u0027...didn\u0027t have mental stamina to do that before...\u0027\", \"\u0027...positive affirmations and growth mindset...\u0027\"]), Code(slug=\u0027supportive-encouragement\u0027, name=\u0027Valuing supportive and personal encouragement during recovery\u0027, description=\u0027Encouragement and belief from recovery coach Jason boosted motivation and aided healing, illustrating importance of personal connection in recovery journey.\u0027, quotes=[\"\u0027...text messages saying i climbed mountain ... i know you can do it\u0027\", \"\u0027...great having someone who believes in you that much...\u0027\"]), Code(slug=\u0027empowering-self-statements\u0027, name=\u0027Developing empowering self-statements to combat anxiety\u0027, description=\u0027Participant learned to replace disempowering anxiety statements with growth-oriented affirmations fostering positive and hopeful mindset for emotional resilience.\u0027, quotes=[\"\u0027...saying i am anxious is disempowering ... say i am on my way to getting better\u0027\", \"\u0027...it\u0027s a journey rather than a stuck state...\u0027\"]), Code(slug=\u0027recovery-is-journey\u0027, name=\u0027Recognizing recovery as a journey, not a fixed state\u0027, description=\u0027Recovery involves ongoing management and coping rather than symptom absence, using tools to handle fluctuations and maintain progress without fear.\u0027, quotes=[\"\u0027...have tools to fix that ... life is stressful ... i can refocus\u0027\", \"\u0027...journey ... can\u0027t keep comparing yourself...\u0027\"]), Code(slug=\u0027long-covid-frustration-isolation\u0027, name=\u0027Feeling frustrated and isolated due to long COVID limitations\u0027, description=\u0027Participants express frustration with ongoing symptoms and limitations from long COVID, feeling isolated and disconnected from prior healthy life and social connections.\u0027, quotes=[\"\u0027...feel drained all the time ... used to be active now barely manage walk...\u0027\", \"\u0027...people don\u2019t see struggle you go through ... makes you feel alone...\u0027\"]), Code(slug=\u0027desire-understanding-validation\u0027, name=\u0027Desire for understanding and validation from others\u0027, description=\u0027Participants strongly desire acknowledgement and belief in their long COVID and ME/CFS experience to reduce stigma and obtain emotional support.\u0027, quotes=[\"\u0027...sometimes it feels like people think it\u2019s in your head...\u0027\", \"\u0027...validation would mean the world ... proves not making this up...\u0027\"]), Code(slug=\u0027regain-physical-energy\u0027, name=\u0027Need to regain physical energy and return to normal function\u0027, description=\u0027Participants express longing to regain physical energy and resume routine activities without debilitating fatigue, describing simple tasks as exhausting.\u0027, quotes=[\"\u0027...if i could get some energy back ... feel like myself\u0027\", \"\u0027...fatigue so overwhelming even making meal feels like climbing mountain...\u0027\"]), Code(slug=\u0027search-effective-treatment\u0027, name=\u0027Search for effective treatment and cures for symptom relief\u0027, description=\u0027Participants discuss ongoing search for treatments that relieve symptoms or bring recovery, facing frustration with lack of clear options and trial and error approaches.\u0027, quotes=[\"\u0027...tried so many treatments but nothing works...\u0027\", \"\u0027...keep hoping for a cure to move on with life...\u0027\"]), Code(slug=\u0027coping-identity-changes\u0027, name=\u0027Coping with changes to identity and sense of self\u0027, description=\u0027Participants mourn their previous healthy self and struggle with new limitations and changed roles, affecting identity and self-concept.\u0027, quotes=[\"\u0027...don\u2019t recognize person i am now compared to before...\u0027\", \"\u0027...hard to accept not doing what used to do...\u0027\"]), Code(slug=\u0027anger-fight-flight\u0027, name=\u0027Anger as fight or flight physiology driving chronic pain\u0027, description=\u0027Anger is a survival physiological response generated by fight or flight sensations causing chronic pain deeply wired in nervous system, uncontrollable by conscious mind.\u0027, quotes=[\"\u0027...biggest factor keeping people in pain is anger ... fight or flight sensation\u0027\", \"\u0027anger and anxiety are physiological survival responses ... no control\u0027\"]), Code(slug=\u0027pain-memory-neuroplasticity\u0027, name=\u0027Chronic pain as embedded memory in neuroplastic pain circuits\u0027, description=\u0027Chronic pain seen as permanent brain memory in pain circuits that cannot be erased; fighting pain reinforces it; acceptance allows separation and symptom reduction.\u0027, quotes=[\"\u0027...pain circuits absolutely permanent like phantom limb pain\u0027\", \"\u0027...fighting pain reinforces it; you learn to separate yourself from pain\u0027\"]), Code(slug=\u0027unconscious-brain-survival\u0027, name=\u0027Unconscious brain drives survival responses and chronic symptoms\u0027, description=\u0027Unconscious brain processes vast information to keep alive, chronic symptoms arise from physiological threat states beyond conscious control, explaining difficulty managing illness consciously.\u0027, quotes=[\"\u0027...unconscious brain keeps you alive ... conscious brain only small part\u0027\", \"\u0027...can\u0027t control it like dragging with handbrakes\u0027\"]), Code(slug=\u0027letting-go-fighting-pain\u0027, name=\u0027Letting go of fighting pain as crucial to healing process\u0027, description=\u0027Healing requires shifting from fighting pain to letting go and acceptance, reducing reinforcement of pain circuits and creating new neural pathways supporting life on own terms.\u0027, quotes=[\"\u0027...hardest part is people can\u0027t help but try to fix themselves\u0027\", \"\u0027...learn to separate yourself from pain and get on with life\u0027\"]), Code(slug=\u0027threat-physiology-chronic-symptoms\u0027, name=\u0027Threat physiology underlies chronic mental and physical symptoms\u0027, description=\u0027Chronic symptoms including pain, anxiety and depression stem from sustained threat physiology causing nervous system hyperactivity and inflammation, requiring calming physiology rather than only treating symptoms.\u0027, quotes=[\"\u0027...every chronic disease related to chronic stress\u0027\", \"\u0027...anxiety depression bipolar ocd schizophrenia are metabolic inflammatory disorders\u0027\"]), Code(slug=\u0027separating-negative-thoughts\u0027, name=\u0027Separating oneself from negative and repetitive thoughts\u0027, description=\u0027Separating identity from negative intrusive thoughts using therapies reduces physiological arousal caused by thoughts that fuel anxiety and pain.\u0027, quotes=[\"\u0027...separate from the thoughts that\u0027s where behavior therapy comes into play\u0027\", \"\u0027...direct relationship between thoughts and suicide attempts\u0027\"]), Code(slug=\u0027nurturing-joy-healing\u0027, name=\u0027Nurturing joy as a vital part of healing journey\u0027, description=\u0027Joy through positive experiences and relationships supports healing by building new neural pathways, countering threat physiology and enabling flourishing beyond pain.\u0027, quotes=[\"\u0027...nurture joy if you\u2019re fighting stress not possible\u0027\", \"\u0027...good food good wine good friends promote healing\u0027\"]), Code(slug=\u0027sleep-diet-exercise-nervous-system\u0027, name=\u0027Importance of sleep diet and exercise for calming nervous system\u0027, description=\u0027Sleep, diet and exercise foundational for calming nervous system, regulating physiology, reducing inflammation and supporting healing and regeneration.\u0027, quotes=[\"\u0027...address sleep is number one...\u0027\", \"\u0027...lack of sleep causes chronic back pain not the way around\u0027\"]), Code(slug=\u0027physiology-over-consciousness\u0027, name=\"Physiology\u0027s dominance over conscious brain in symptom experience\", description=\u0027Physiological nervous system responses overpower conscious brain\u2019s control of symptoms; fight or flight inhibits cognitive function, making conscious efforts insufficient alone.\u0027, quotes=[\"\u0027...half a million times stronger than conscious brain\u0027\", \"\u0027...highest thinking brain neocortex doesn\u2019t work in fight or flight\u0027\"]), Code(slug=\u0027skepticism-starting-point-healing\u0027, name=\u0027Using skepticism as a starting point to engage in healing\u0027, description=\u0027Skepticism is a valid initial stance for learning new healing approaches, encouraging connection to experience and curiosity rather than blind belief to gradually shift physiology and symptoms.\u0027, quotes=[\"\u0027...don\u0027t believe me ... connect to skepticism ... starting point\u0027\", \"\u0027...start doing the work now letting your brain change\u0027\"]), Code(slug=\u0027book-key-pain-recovery\u0027, name=\u0027Book as key to chronic pain recovery approach\u0027, description=\u0027A specific book was pivotal for understanding and recovery from chronic pain, resonating with symptoms and personality, influencing therapeutic career choice.\u0027, quotes=[\"\u0027...book by john sono ... back pain gone ... health problems went away\u0027\", \"\u0027...personality characteristics true for me and most clients\u0027\"]), Code(slug=\u0027emotion-focused-pain-therapy\u0027, name=\u0027Emotion-focused therapy as core to pain recovery process\u0027, description=\u0027Intensive Short-Term Dynamic Psychotherapy (ISTDP) is central for chronic pain recovery, focusing on accessing and processing suppressed emotions like anger and rage causing physical pain.\u0027, quotes=[\"\u0027...core intervention is emotion focused approach ... all emotions healthy\u0027\", \"\u0027...therapy helps notice bodily tension often anxiety about anger or rage\u0027\"]), Code(slug=\u0027therapy-engagement-barriers\u0027, name=\u0027Barriers to engaging with emotion-focused therapy include fear and trust issues\u0027, description=\u0027Patients face fears and defenses that hinder engagement with emotion-focused therapy; require gradual emotional exposure and support to lower defenses and benefit from treatment.\u0027, quotes=[\"\u0027...some folks work quickly others more complicated with challenges\u0027\", \"\u0027...ISTDP difficult but supportive ... gradual emotional threshold building\u0027\"]), Code(slug=\u0027professional-acceptance-therapy\u0027, name=\u0027Growing acceptance of emotion-focused therapy among medical professionals\u0027, description=\u0027Medical community increasingly recognizes and integrates emotion-focused therapy for chronic pain, with training, referrals, and scientific support increasing over time.\u0027, quotes=[\"\u0027...most folks come because they accept this approach\u0027\", \"\u0027...training doctors in local hospital ... growing recognition\u0027\"]), Code(slug=\u0027mindset-shift-therapy-acceptance\u0027, name=\u0027Mindset shift required for accepting therapy as part of recovery\u0027, description=\u0027Acceptance of therapy requires paradigm shift from seeing mental health as separate to integrating physical and emotional health, moving from coping to true recovery path.\u0027, quotes=[\"\u0027...mental health and physical health often thought separate\u0027\", \"\u0027...therapy seen as coping not to get better initially\u0027\"]), Code(slug=\u0027emotions-source-physical-pain\u0027, name=\u0027Understanding emotions as the source of physical pain\u0027, description=\u0027Emotions, especially unacceptable or dangerous ones, are converted into physical symptoms such as chronic pain; MRI research supports this process, validating psychological origins and need for emotional therapy.\u0027, quotes=[\"\u0027...strategies to ward off dangerous emotions turned into physical pain\u0027\", \"\u0027...chronic pain brains light up amygdala responsible for anger and rage\u0027\"])]\n\n\n## THEMES\nthemes: themes=[Theme(name=\u0027experiencing relentless fatigue and energy crashes leading to debilitating daily function loss\u0027, description=\u0027Participants describe severe exhaustion triggered by minimal physical activity, such as standing, causing complete energy depletion that leads to prolonged bed rest and inability to perform basic tasks. This relentless fatigue often worsens through overexertion, causing relapses that significantly disrupt their day-to-day functioning and independence.\u0027, code_slugs=[\u0027persistent-fatigue-energy\u0027, \u0027overexertion-relapse-cycle\u0027, \u0027pushing-through-fatigue\u0027]), Theme(name=\u0027struggling with chronic illness limits while maintaining hope and adjusting lifestyle\u0027, description=\u0027Participants experience tension between initially denying their condition and accepting the need for significant lifestyle changes. They emphasize maintaining positive, hopeful mindsets and learning to set personal boundaries to manage energy, avoid overcommitment, and prevent relapse while gradually adapting to the chronic illness realities.\u0027, code_slugs=[\u0027acceptance-lifestyle-changes\u0027, \u0027hope-positivity-chronic-illness\u0027, \u0027self-awareness-overexertion\u0027, \u0027setting-boundaries-energy\u0027]), Theme(name=\u0027embracing brain retraining and nervous system calming for symptom control and recovery\u0027, description=\u0027Skepticism shifts to trust in brain retraining programs that address fight or flight responses embedded in the nervous system, enabling participants to gain control, reduce anxiety, and observe improvements. These approaches are embraced as fundamental parts of recovery, complementing emotional regulation and nervous system calming strategies.\u0027, code_slugs=[\u0027brain-retraining-recovery\u0027, \u0027brain-nervous-sys-fatigue\u0027, \u0027skepticism-brain-retraining\u0027, \u0027skepticism-starting-point-healing\u0027]), Theme(name=\u0027difficulties with genuine rest and relaxation practices essential for recovery\u0027, description=\u0027Participants struggle to implement real rest and authentic relaxation, such as meditation or naps, finding it challenging to override ingrained habits and mental resistance. Learning to genuinely relax is necessary and transformative but remains a persistent challenge in managing ongoing fatigue and symptoms.\u0027, code_slugs=[\u0027difficulty-relaxing-rest\u0027]), Theme(name=\u0027emotional struggle from social misunderstandings requiring boundaries to protect well-being\u0027, description=\u0027Frustrations arise from others\u2019 misunderstanding and minimizing of their illness, often triggering anger and emotional distress. Participants describe the necessity of setting emotional boundaries around discussing symptoms and managing social interactions to protect mental health and maintain recovery progress.\u0027, code_slugs=[\u0027anger-misunderstanding-others\u0027, \u0027emotional-boundaries-symptoms\u0027]), Theme(name=\u0027valuing holistic recovery over symptom-specific treatments to foster comprehensive healing\u0027, description=\u0027Participants highlight that focusing exclusively on symptom management offers only temporary relief. Embracing a holistic approach supporting the entire body leads to more meaningful recovery. Symptom-specific fixes are often frustrating and disillusioning, emphasizing the need for integrated, personalized recovery strategies.\u0027, code_slugs=[\u0027holistic-recovery-focus\u0027, \u0027symptom-management-palliation\u0027, \u0027frustration-symptom-fix\u0027]), Theme(name=\u0027recognizing the need for personalized recovery plans tailored to unique illness journeys\u0027, description=\u0027Recovery must be individually customized considering unique symptoms, lifestyles, and wellness paths. Participants stress that pacing, treatments, and strategies must be flexible and personally relevant to empower their healing journey effectively, avoiding generic or one-size-fits-all approaches.\u0027, code_slugs=[\u0027personalized-recovery-plans\u0027]), Theme(name=\u0027deep gratitude for renewed life and profound relationship changes after illness recovery\u0027, description=\u0027Experiencing recovery, participants express overwhelming gratitude and awe, describing feelings like a \u201cwalking miracle.\u201d They reflect joy and appreciation for daily life and relationships while acknowledging challenges in reconnecting with healthy peers and adjusting social dynamics post-illness.\u0027, code_slugs=[\u0027walking-miracle-gratitude\u0027, \u0027difficulty-relating-healthy\u0027]), Theme(name=\u0027challenge and resilience through medical misdiagnosis prompting strong self-advocacy\u0027, description=\u0027Frustration from delayed or incorrect diagnoses leads participants to take active roles in their healthcare by researching providers, seeking knowledgeable specialists, and discovering underlying conditions. This self-advocacy is crucial to accessing effective treatments and regaining control over their health.\u0027, code_slugs=[\u0027diagnosis-delay-misdiagnosis\u0027, \u0027self-advocacy-healthcare\u0027, \u0027genetic-mitochondrial-treatment\u0027]), Theme(name=\u0027undertaking drastic lifestyle changes including diet, movement, and toxin avoidance for healing\u0027, description=\u0027Participants commit to significant life alterations, such as elimination diets, gentle movement therapy, and reducing environmental toxins. Overcoming challenges like sugar addiction, they carefully pace their rehabilitation to support inflammation reduction and sustainable recovery.\u0027, code_slugs=[\u0027drastic-lifestyle-changes\u0027, \u0027overcoming-sugar-addiction\u0027, \u0027movement-therapy-gentle-rehab\u0027]), Theme(name=\u0027transforming through psychological growth, spiritual awakening, and enhanced self-expression\u0027, description=\u0027The chronic illness journey fosters deep psychological and spiritual transformation. Participants gain humility, acceptance, and a renewed sense of self, employing authentic communication and boundary-setting skills. Spiritual experiences sometimes challenge daily life but contribute significantly to healing and personal development.\u0027, code_slugs=[\u0027psychological-growth-illness\u0027, \u0027spiritual-experience-healing\u0027, \u0027authentic-self-expression\u0027, \u0027self-empowerment-knowledge-faith\u0027]), Theme(name=\u0027managing anxiety related to pregnancy symptoms with self-compassion and cautious optimism\u0027, description=\u0027Participants face fear and anxious uncertainty interpreting pregnancy symptoms through the lens of past illness. They learn to differentiate normal pregnancy experiences from relapse signs, cultivating self-kindness and cautious hope to navigate this emotional terrain safely.\u0027, code_slugs=[\u0027pregnancy-anxiety-relapse\u0027]), Theme(name=\"inspired hope and community support from witnessing others\u0027 recoveries\", description=\u0027Seeing others improve and connect with supportive communities provides vital hope to participants, reducing loneliness and sustaining motivation. Shared experiences validate their journey, fostering perseverance and faith in eventual improvements despite chronic challenges.\u0027, code_slugs=[\u0027hope-positivity-others-recover\u0027, \u0027validation-hope-connection\u0027]), Theme(name=\u0027early illness shock and isolation amidst misunderstood symptoms and lack of diagnosis\u0027, description=\u0027Participants recount a frightening onset of chronic fatigue characterized by confusion, isolation from friends and usual environments, and emotional distress. Misdiagnoses and being dismissed as depressed amplify feelings of misunderstanding and loneliness during critical early stages.\u0027, code_slugs=[\u0027scary-confusing-early-illness\u0027, \u0027feeling-isolated-illness\u0027, \u0027reject-depression-diagnosis\u0027]), Theme(name=\u0027desperation fuels trial of varied alternative therapies seeking relief and recovery\u0027, description=\u0027Driven by urgency and hope, participants experiment with multiple complementary therapies including acupuncture, reiki, nutrition, and colon hydrotherapy. Though outcomes vary, this exploration reflects a willingness to try diverse methods amid limited conventional options.\u0027, code_slugs=[\u0027desperation-trying-therapies\u0027]), Theme(name=\u0027unlocking healing by addressing suppressed anger, trauma, and mind-body connections\u0027, description=\u0027Recognition and processing of unresolved anger, trauma, and stress patterns emerge as central to recovery. Participants link physical symptoms to emotional blocks and trauma manifestations, employing mind-body frameworks to facilitate breakthroughs and alleviate symptom severity.\u0027, code_slugs=[\u0027suppressed-anger-trauma\u0027, \u0027mindbody-trauma-understanding\u0027]), Theme(name=\u0027engaging in emotion-focused therapy to safely process difficult emotions underlying pain\u0027, description=\u0027Participants engage in intensive therapeutic approaches such as ISTDP to access and work through suppressed emotions like anger and rage. Despite fears and trust barriers, gradually confronting these feelings reveals their role in physical pain and supports emotional and physical healing.\u0027, code_slugs=[\u0027emotion-focused-pain-therapy\u0027, \u0027therapy-engagement-barriers\u0027, \u0027emotions-source-physical-pain\u0027]), Theme(name=\u0027gaining validation and hope from medical acceptance and evolving pain recovery treatments\u0027, description=\u0027Increasing recognition of emotion-focused therapy within medical communities provides participants with critical validation and optimism. Growing professional acceptance and scientific support enhance trust in therapies targeting emotional causes of chronic pain, positively influencing recovery experiences.\u0027, code_slugs=[\u0027professional-acceptance-therapy\u0027]), Theme(name=\u0027adapting mindset to accept therapy as an integral part of chronic illness recovery\u0027, description=\u0027Participants describe a challenging but vital mental shift from viewing therapy as coping to embracing it as essential for true recovery. This shift bridges perceived divides between mental and physical health, fostering commitment to holistic healing beyond symptom management.\u0027, code_slugs=[\u0027mindset-shift-therapy-acceptance\u0027]), Theme(name=\u0027living with chronic symptoms involves acceptance and developing tools to manage setbacks\u0027, description=\u0027Participants acknowledge that recovery is an ongoing journey requiring acceptance of fluctuating symptoms. They rely on coping strategies, empowering self-statements, and supportive encouragement to maintain progress, regain confidence, and face challenges without fear or frustration.\u0027, code_slugs=[\u0027recovery-is-journey\u0027, \u0027mental-stamina-recovery\u0027, \u0027empowering-self-statements\u0027, \u0027supportive-encouragement\u0027]), Theme(name=\u0027experiencing isolation and frustration from long COVID and desire for empathy and validation\u0027, description=\u0027Long COVID participants report persistent fatigue limiting activities, leading to isolation and emotional distress. A strong desire for empathetic recognition and validation from others underscores their need for acknowledgment of their struggles and supports to mitigate stigma and loneliness.\u0027, code_slugs=[\u0027long-covid-frustration-isolation\u0027, \u0027desire-understanding-validation\u0027]), Theme(name=\u0027yearning to regain physical energy and normal functioning to reclaim identity\u0027, description=\u0027Participants express deep longing to restore lost energy and perform daily activities without exhaustion. This desire is connected to coping with identity shifts caused by chronic illness, reflecting a struggle to accept new limitations and reclaim a sense of self.\u0027, code_slugs=[\u0027regain-physical-energy\u0027, \u0027coping-identity-changes\u0027]), Theme(name=\u0027struggling with medical uncertainty and frustration over normal test results despite symptoms\u0027, description=\u0027Participants experience doubt and confusion when extensive medical tests show normal results despite debilitating symptoms. This leads to questioning the nature of their illness and considering mental health explanations, highlighting challenges in diagnosis and validation.\u0027, code_slugs=[\u0027frustration-medical-tests\u0027, \u0027energy-loss-fatigue\u0027]), Theme(name=\u0027understanding chronic pain as a brain-embedded survival response requiring acceptance\u0027, description=\"Pain is perceived as a persistent neural memory embedded in the brain\u0027s pain circuits. Participants find that fighting pain reinforces it, while acceptance and separation from pain facilitate creating new neural pathways, enabling life despite chronic symptoms driven by autonomic threat responses.\", code_slugs=[\u0027pain-memory-neuroplasticity\u0027, \u0027anger-fight-flight\u0027, \u0027letting-go-fighting-pain\u0027, \u0027threat-physiology-chronic-symptoms\u0027, \u0027physiology-over-consciousness\u0027, \u0027unconscious-brain-survival\u0027]), Theme(name=\u0027breaking free from negative thought cycles to reduce pain and emotional distress\u0027, description=\u0027Participants describe battling negative repetitive thoughts that aggravate anxiety and symptoms. Learning to separate self-identity from these intrusive thoughts through behavioral and expressive therapies reduces distress and supports healing by calming physiological arousal.\u0027, code_slugs=[\u0027separating-negative-thoughts\u0027]), Theme(name=\u0027cultivating joy, safety, and health habits to counteract chronic stress and support healing\u0027, description=\u0027Joyful experiences, positive relationships, and lifestyle factors like sleep, diet, and exercise foster nervous system calm and create conditions conducive to healing. Participants emphasize balancing physiological safety and nurturance to overcome chronic illness and thrive despite past pain and stress.\u0027, code_slugs=[\u0027nurturing-joy-healing\u0027, \u0027sleep-diet-exercise-nervous-system\u0027]), Theme(name=\u0027discovering hope and new perspectives through transformational recovery literature\u0027, description=\"Key books such as Dr. John Sarno\u0027s work resonate deeply with participants, offering explanation, hope, and practical recovery approaches. These writings introduce mind-body concepts that inspire therapeutic career paths and provide foundational knowledge supporting recovery.\", code_slugs=[\u0027book-key-pain-recovery\u0027])]\n\n\n## TASK\n\nWrite this up as a standard qualitative report, ready copying and pasting into the results section\nof an academic journal. \nDon\u0027t include titles, intro, citations or extended discussion \u2014 this is just the result of the analysis.\nBe brief - about 1 paragraph per theme. Make sure to include quotes for each theme which explain and bring the theme to life for readers. Do not edit quotes. No preamble - just report. Use simple markdown. Make the theme names bold face.\nAlways use the tools/JSON response.\n\n```json"
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"template_text": "Results of a thematic analysis:\n\n## CODES\n\n{{codes}}\n\n\n## THEMES\n{{themes}}\n\n\n## TASK\n\nWrite this up as a standard qualitative report, ready copying and pasting into the results section\nof an academic journal. \nDon\u0027t include titles, intro, citations or extended discussion \u2014 this is just the result of the analysis.\nBe brief - about 1 paragraph per theme. Make sure to include quotes for each theme which explain and bring the theme to life for readers. Do not edit quotes. No preamble - just report. Use simple markdown. Make the theme names bold face.\n\n[[report]]",
"type": "Transform"
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"\u0027...the minute i stood up i just couldn\u0027t do anything i just drained of energy completely\u0027",
"\u0027...always tired constantly tired\u0027",
"\u0027...walking like ten miles every day ... i picked up a couple of viruses ... can\u0027t get out of bed\u0027",
"\u0027...had to retire at that stage ... kept pushing myself\u0027",
"\u0027i wouldn\u0027t let myself not go ... i\u0027d wake up at five o\u0027clock ... just went walking\u0027",
"\u0027then i couldn\u0027t do anything for myself ... had to lie down because no energy to cook\u0027",
"\u0027...i am going to have to make life changes ... my life is going to have to change\u0027",
"\u0027part of it was just ignorance be part of it\u0027",
"\u0027...when he explaining ... your body has switched down some of the genes ... fight too much ... made sense\u0027",
"\u0027...contacted jason and went onto his program because it actually really made sense\u0027",
"\u0027if my phone rings i let it go to voicemail so i can deal with it when i want to\u0027",
"\u0027learning boundaries the hardest for me was learning boundaries\u0027",
"\u0027...i\u0027m not good at relaxing ... people say do meditation ... i just struggled with it\u0027",
"\u0027...now i make myself every day lay down and take a nap or do some meditation\u0027",
"\u0027when people say silly things sometimes ... i can flare up\u0027",
"\u0027...when somebody minimizes it you can think no\u0027",
"\u0027...i\u0027m just a very positive person ... also obstinate\u0027",
"\u0027never ever felt ... i was almost like in denial\u0027",
"\u0027...i\u0027ve learnt to listen to myself listen to my body ... work out what my triggers are\u0027",
"\u0027i can stop myself before i actually get to the stage where i\u0027m really pushing boundaries\u0027",
"\u0027...recovery ended up being not about focusing on symptoms but on supporting my body as a whole...\u0027",
"\u0027...as i slowly improved overall my symptoms slowly decreased...\u0027",
"\u0027...people want to compare their symptoms against mine... to see if we\u0027re the same...\u0027",
"\u0027...don\u0027t get too caught up on comparing symptoms...\u0027",
"\u0027...symptom management that i did was more palliative not about recovery...\u0027",
"\u0027...if i had pain i might take painkillers or see doctor for sedatives...\u0027",
"\u0027...somebody\u0027s recovery plan ... needs to be tailored...\u0027",
"\u0027...pacing has to be tailored individually because their life is so different...\u0027",
"\u0027...spent thousands of hours googling symptoms...\u0027, \u0027...almost poisoning myself by buying organic elderberries...\u0027",
"\u0027...needed a more comprehensive strategy rather than symptom by symptom fixes...\u0027",
"\u0027...have boundaries ... not talking about old symptoms ...\u0027",
"\u0027...writing my story took forever because it\u0027s traumatizing going back...\u0027",
"\u0027...i have to catch myself and be like you are a walking miracle like this is incredible\u0027",
"\u0027It\u0027s like being like when you watch a six year old wandering...\u0027",
"\u0027...friends who\u0027ve never been through it ... complain about their lives ... detachment\u0027",
"\u0027...i really struggle with people who seem physically able but choose not to...\u0027",
"\u0027...diagnosed with fibromyalgia ignoring fatigue... no treatment for many years...\u0027",
"\u0027It took a while before chronic fatigue diagnosis...\u0027",
"\u0027...researching doctors as much as i could ... moved to get better care...\u0027",
"\u0027...linked with doctors testing underlying infections...\u0027",
"\u0027...mitochondrial disease called mitochondrial dna depletion syndrome...\u0027",
"\u0027...put on cocktail to boost mitochondria and fight infections...\u0027",
"\u0027...dramatically change diet using food as medicine...\u0027",
"\u0027...removed toxic ingredients and used water filtration...\u0027",
"\u0027Sugar was a massive one ... clearly had physical addiction...\u0027",
"\u0027...up in middle of night every night and eat sugar\u0027",
"\u0027...gradually increase ability to move ... one to two minutes a day initially...\u0027",
"\u0027...couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed...\u0027",
"\u0027It humbled me ... changed me ... i wouldn\u0027t say i had spirituality before\u0027",
"\u0027...illness catapults our growth and puts us in a better direction\u0027",
"\u0027I keep reminding myself these are normal symptoms... fatigue or relapse?\u0027",
"\u0027...normal to have headaches when pregnant, normal to feel tired...\u0027",
"\u0027...so nice to see many people getting past these things\u0027",
"\u0027...people start reaching out to me, i recovered as well...\u0027",
"\u0027...had to go through years of research and learning\u0027",
"\u0027It was like getting a bachelor\u2019s degree in chronic illness\u0027",
"\u0027...felt a bit fluy felt a bit strange felt a bit scared because it felt really weird\u0027",
"\u0027...didn\u0027t know what was going on ... really scary time\u0027",
"\u0027...all my friends from home had gone to university ... didn\u0027t really have anyone other than family\u0027",
"\u0027...it was a very tough time\u0027",
"\u0027one of the first doctors said she just thought i was depressed\u0027",
"\u0027i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell\u0027",
"\u0027...perhaps meditation and yoga can help me heal\u0027",
"\u0027...felt different after doing alternate nostril breathing\u0027",
"\u0027...went for reiki and this and that\u0027",
"\u0027...flew to america to work with healer\u0027",
"\u0027...had suppressed anger and unresolved trauma in my system\u0027",
"\u0027...avoiding conflict at all costs\u0027",
"\u0027...looking at symptoms ... emotion underlying this symptom\u0027",
"\u0027...impact of trauma on my system manifesting physically like a freeze response\u0027",
"\u0027learning to be more myself more authentic\u0027",
"\u0027learning non violent communication...\u0027",
"\u0027...spiritual awakening\u0027",
"\u0027...felt like connecting with the whole universe\u0027",
"\u0027...periodically trauma type symptoms\u0027",
"\u0027...go do work with a practitioner or spend night time in nature\u0027",
"\u0027...lots of therapeutic and coaching trainings\u0027",
"\u0027...nearly twenty years working in this field\u0027",
"\u0027...a lot of my trauma wasn\u0027t personal but was ancestral ... from family line\u0027",
"\u0027...illness in one person might be a wider family system issue\u0027",
"\u0027...sexually assaulted and that led to urinary tract infection ... system blacked out ... flu twenty four seven\u0027",
"\u0027...digestive issues ... hot flashes even though young\u0027",
"\u0027...so scared ... it was such a death sentence but also a life sentence\u0027",
"\u0027...relieved to have diagnosis ... no cure\u0027",
"\u0027...totally miserable ... taking away anything you enjoy eating\u0027",
"\u0027...felt it was being done to me ... perpetuating trauma\u0027",
"\u0027...have to regain my agency and collaboration in healing\u0027",
"\u0027...started realizing with diet ... otherwise i was resenting it\u0027",
"\u0027...internal state of nonresistance or peace ... it just kind of happened\u0027",
"\u0027...watching symptoms but felt peace\u0027",
"\u0027...brain and nervous system processing stress ... not sick but stressed\u0027",
"\u0027...brain generates pain fatigue because it senses danger\u0027",
"\u0027...self criticism activates danger alarm in brain ... feeds symptoms\u0027",
"\u0027...talk to myself in a compassionate way ... what do you want right now\u0027",
"\u0027perfectionist check, people pleasers check ... really conscientious\u0027",
"\u0027holding the emotions ... like a pressure cooker\u0027",
"\u0027...some psychotherapy was helpful ... talk through griefs\u0027",
"\u0027...journaling your anger ... bottled up anger can be very harmful\u0027",
"\u0027...spent three hours on phone ... finally heard the truth ... gave me hope\u0027",
"\u0027...got up and ran around the block like never before\u0027",
"\u0027...started to get really tired ... no motivation to do activities...\u0027",
"\u0027...laying in bed would get canker sores ... not feeling the best\u0027",
"\u0027...multiple doctors said everything was perfectly fine ...\u0027",
"\u0027...thought maybe something mentally causing this\u0027",
"\u0027...program has hypnosis type of effect ... initially skeptical\u0027",
"\u0027...committed and made a difference\u0027",
"\u0027...didn\u0027t have mental stamina to do that before...\u0027",
"\u0027...positive affirmations and growth mindset...\u0027",
"\u0027...text messages saying i climbed mountain ... i know you can do it\u0027",
"\u0027...great having someone who believes in you that much...\u0027",
"\u0027...saying i am anxious is disempowering ... say i am on my way to getting better\u0027",
"\u0027...it\u0027s a journey rather than a stuck state...\u0027",
"\u0027...have tools to fix that ... life is stressful ... i can refocus\u0027",
"\u0027...journey ... can\u0027t keep comparing yourself...\u0027",
"\u0027...feel drained all the time ... used to be active now barely manage walk...\u0027",
"\u0027...people don\u2019t see struggle you go through ... makes you feel alone...\u0027",
"\u0027...sometimes it feels like people think it\u2019s in your head...\u0027",
"\u0027...validation would mean the world ... proves not making this up...\u0027",
"\u0027...if i could get some energy back ... feel like myself\u0027",
"\u0027...fatigue so overwhelming even making meal feels like climbing mountain...\u0027",
"\u0027...tried so many treatments but nothing works...\u0027",
"\u0027...keep hoping for a cure to move on with life...\u0027",
"\u0027...don\u2019t recognize person i am now compared to before...\u0027",
"\u0027...hard to accept not doing what used to do...\u0027",
"\u0027...biggest factor keeping people in pain is anger ... fight or flight sensation\u0027",
"\u0027anger and anxiety are physiological survival responses ... no control\u0027",
"\u0027...pain circuits absolutely permanent like phantom limb pain\u0027",
"\u0027...fighting pain reinforces it; you learn to separate yourself from pain\u0027",
"\u0027...unconscious brain keeps you alive ... conscious brain only small part\u0027",
"\u0027...can\u0027t control it like dragging with handbrakes\u0027",
"\u0027...hardest part is people can\u0027t help but try to fix themselves\u0027",
"\u0027...learn to separate yourself from pain and get on with life\u0027",
"\u0027...every chronic disease related to chronic stress\u0027",
"\u0027...anxiety depression bipolar ocd schizophrenia are metabolic inflammatory disorders\u0027",
"\u0027...separate from the thoughts that\u0027s where behavior therapy comes into play\u0027",
"\u0027...direct relationship between thoughts and suicide attempts\u0027",
"\u0027...nurture joy if you\u2019re fighting stress not possible\u0027",
"\u0027...good food good wine good friends promote healing\u0027",
"\u0027...address sleep is number one...\u0027",
"\u0027...lack of sleep causes chronic back pain not the way around\u0027",
"\u0027...half a million times stronger than conscious brain\u0027",
"\u0027...highest thinking brain neocortex doesn\u2019t work in fight or flight\u0027",
"\u0027...don\u0027t believe me ... connect to skepticism ... starting point\u0027",
"\u0027...start doing the work now letting your brain change\u0027",
"\u0027...book by john sono ... back pain gone ... health problems went away\u0027",
"\u0027...personality characteristics true for me and most clients\u0027",
"\u0027...core intervention is emotion focused approach ... all emotions healthy\u0027",
"\u0027...therapy helps notice bodily tension often anxiety about anger or rage\u0027",
"\u0027...some folks work quickly others more complicated with challenges\u0027",
"\u0027...ISTDP difficult but supportive ... gradual emotional threshold building\u0027",
"\u0027...most folks come because they accept this approach\u0027",
"\u0027...training doctors in local hospital ... growing recognition\u0027",
"\u0027...mental health and physical health often thought separate\u0027",
"\u0027...therapy seen as coping not to get better initially\u0027",
"\u0027...strategies to ward off dangerous emotions turned into physical pain\u0027",
"\u0027...chronic pain brains light up amygdala responsible for anger and rage\u0027"
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"original_sentences": [
"SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unw",
"ory of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because ",
"ne o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that",
"y it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have y",
"ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that ",
"AKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give ",
"oman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of",
"e obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising",
"w i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t",
" morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s h",
"don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i f",
"as there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the t",
"ed of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they u",
"ady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it wa",
"eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but n",
" the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to t",
"ny years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses bec",
" like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out o",
"oke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing m",
"being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which",
"ort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah",
" to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put",
"my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage",
" back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my b",
"\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill a",
" a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk tha",
"ce and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit",
" running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapse",
"don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelv",
"d i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know t",
"sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve ne",
" to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy",
"ything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just ",
"s that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there w",
"nty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and ",
"e it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooki",
"m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_",
"ies brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether",
"d this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and th",
" to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking abo",
"as just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find someb",
"on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is i",
" i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in ",
" brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was sc",
" you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that ",
"d him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly thing",
"ck sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creep",
" even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think",
"t onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found ",
"low through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a probl",
" i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever ",
" go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s ",
"ss i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to k",
" and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme wi",
"people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027",
" gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that",
"e up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think par",
"t going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes wel",
"he doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probab",
"an i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that po",
"ress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where ",
"ng it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in th",
"fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it ",
"closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what ",
"e a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the har",
" what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing",
"lieving that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of ",
"meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i",
"this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i sti",
" longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the ",
"actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my ",
" to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it",
"e me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be",
"et home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s",
"at i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027",
"rsonality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a w",
"d to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatig",
"t you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it",
" where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to",
" else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work ",
"n\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the ti",
" just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: ",
"ng boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you",
" that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired ma",
"ike what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to",
" every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not g",
" healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to",
"ou know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like get",
"the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends peop",
"here you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retrai",
"g time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know",
"pportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like q",
"y understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in",
" actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i wou",
"use you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would h",
"they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people a",
"in level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things s",
" control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t ",
" sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pret",
"ou know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring ",
"\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is",
"through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportiv",
"t a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightma",
"se trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took ",
" it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really ge",
"s of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yea",
"for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amo",
"eless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of",
"y need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you",
"ion for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watc",
"find your answers i hope irene is an incredible example of that so yeah thank you for watching\n\n\nSPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lym",
"fs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals ir",
" dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and ",
"y creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or b",
"is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find our",
"cus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed an",
"we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome ",
"pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught",
" with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on",
"t because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what ",
"is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing o",
"s itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable ",
"nt along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i wa",
"ain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now ",
" the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s any",
"f course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s jus",
"at once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also",
"ring my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom t",
" right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day",
"teresting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i",
" recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens the",
"hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly f",
" this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying t",
"ng you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took the",
" levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my",
"h anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i",
"all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027",
"n which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tel",
"ine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the sa",
"st reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you ca",
" my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from h",
"good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is be",
"dy else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recove",
" did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coache",
"had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic ",
" of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that wha",
"ng up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not me",
" many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them ",
"nt to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yea",
"t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027",
"l my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone e",
"to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible f",
"e that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027",
"on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would enc",
"ms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for",
"g and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you som",
"it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when ",
"ith somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you kno",
"t yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i a",
"hat i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person",
"n they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love h",
"eople and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pret",
"one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider th",
"ing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get pe",
"her thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m ",
"e and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you t",
"y change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of ",
"aps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptom",
"w can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you ",
" to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the",
"ompares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out a",
"s been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through",
" so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in t",
"ll be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the sev",
"fs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i tru",
" be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attenti",
"well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s ",
"imes when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedb",
" so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if yo",
"eciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love ",
"g out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n\n\nSPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is",
" really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other ",
"ronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more abo",
"ing me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_0",
" you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wedne",
"doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chan",
" up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just ",
"k it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about ev",
"walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i ne",
"eah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the",
"get because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you ju",
"rld and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i ",
"on\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a ",
"bviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i",
"es it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would g",
"but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing",
"uld and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like tha",
"xactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change thing",
" complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical pro",
" i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of",
"onal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no on",
"e major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s b",
"ns in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fati",
"ssible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so an",
" to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when ",
"hing was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really ",
"the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just real",
" it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lo",
"l it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as",
"ecause childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigati",
"lly great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a whil",
"tein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight",
"as getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my ",
" recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direct",
"ns that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion s",
"done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t p",
"e this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year an",
"itochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know ",
"hat were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love t",
"f the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like m",
"ust not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in gradu",
"hen i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i wa",
" in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seem",
"i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the sam",
"e have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so",
" on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however lo",
"did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00:",
"continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thou",
"esponsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that",
" trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had",
"her things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work o",
"asically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but ",
"ement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went t",
"toxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key ",
"s what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did y",
" and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i",
"airy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some ",
"rian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is ",
" did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break t",
"e i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don",
"t you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encou",
"orate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very",
" life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick ",
"ery hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperati",
"me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another",
"t your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i",
" then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just b",
"ntion sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something",
"et up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a ",
"ane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and ",
"he cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going ",
" it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight t",
"here was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole li",
"eedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself",
"thy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recov",
"0: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort o",
"iritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using t",
"tal toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talkin",
"d when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is defi",
" single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to redu",
" or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to o",
"_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or l",
" don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were ",
"ee i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking thi",
"toms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to els",
"re based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nS",
"olic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalanc",
": one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a w",
"tisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me ",
"rome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just th",
"p my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to c",
"eah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for ",
"ly and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to targ",
" a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that ",
"oint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s real",
"for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging m",
"was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to of",
"brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that",
"_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burd",
" could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so",
"ER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my",
"th god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promise",
"AKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean",
" give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn in",
"l fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing i",
"l to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine ",
"SPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural",
"we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t me",
"tter and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational di",
"ve bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like s",
" hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with",
"ould hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life ",
"rough i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was t",
"herapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wo",
"n to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027",
"ing all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to p",
"on i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better d",
"good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it had",
"nybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_",
"sically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it ",
"it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definite",
" to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other",
"place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognos",
"n\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours com",
" so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this w",
"i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so ",
"people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you wou",
"e so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nS",
"or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was s",
"motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me re",
"is is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how ",
"potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those year",
" tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t ",
"ook years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00",
"SPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degre",
"what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fue",
"edge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i",
"ly it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep pic",
"know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously c",
"s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today i",
"one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving a",
"u\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve g",
"s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and w",
" just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would ",
"y\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head arou",
"ow do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping for",
"can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or t",
"i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understa",
"e that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but tha",
"like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it i",
" such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you ques",
" is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing",
"e a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if any",
"ram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions ",
"ways we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you ",
"ally love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot",
" directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering rig",
"help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit mo",
"ome find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscrib",
"o are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to",
"tories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n\n\nSPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chron",
"yone\n\n\nSPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here",
"le have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than",
"ke mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcomin",
"today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in",
"d an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first bec",
"ur wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the differ",
"s doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel wel",
"nly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my un",
" and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell ",
"t took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life li",
" this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get bett",
"ing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression",
"d not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary t",
"pressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary",
"bly why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low an",
"s kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very toug",
"itially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of ",
"tors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability t",
"depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got i",
"d you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditati",
"nd yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and notic",
"work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one ",
"tions and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel m",
"self better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagi",
" get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said m",
"quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027",
"ad some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027",
"elp on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medici",
"i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i",
"er i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i b",
"o a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things",
"ssue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: t",
"w that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i ",
"y it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these diffe",
"ne of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t liv",
"ngs i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyw",
"i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember readin",
" all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know",
"e lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the sufferi",
"g hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i ",
"t everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people",
"w to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that ",
" was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my bo",
" meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two y",
"p and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i st",
"ink i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around th",
"k on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light ",
"t i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i woul",
"l costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and un",
"stain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try a",
" workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember th",
"herapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check i",
"underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around tra",
"as a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after",
"don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i th",
"then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about th",
"begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to m",
"o we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much ",
"ma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of per",
"ings these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and j",
"round this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is",
"ad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong",
"nto light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i ",
"ng we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was g",
"g too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being ",
"some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i ",
" just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was l",
" done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what d",
" connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communi",
"know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come ou",
"someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a p",
"he pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then ",
"e that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after ",
"s you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a l",
" i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many",
"and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you ",
"unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal w",
"her side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after d",
"old us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a mor",
"t my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you",
"ack i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritu",
"out before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me ",
" an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma e",
"think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritua",
" had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really ama",
" my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritua",
"now sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit a",
"people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day a",
"and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences bu",
"y i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i thin",
" a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAK",
"und normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a ",
"PEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah",
"bly challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean ove",
"like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027",
" yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think",
"rly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted thi",
"en good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can ",
" doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always lear",
"uite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: thi",
": yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish ",
"curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to",
" an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s",
" recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodical",
"recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and ",
"ld come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out",
"and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but",
"as still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about",
"\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go a",
"s now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall",
"u know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER",
"also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and d",
"herapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the g",
" to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in i",
"of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic mo",
"necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working ",
"edible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPE",
"to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring ",
"that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that pe",
"t of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s g",
" find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our w",
"mily consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspe",
"mic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that",
"as trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t ",
"ou\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to con",
" being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much bet",
"glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching",
"you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what ",
"p with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel memb",
" sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join b",
"you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it",
" thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n\n\nSPEAKER_01: hey everyone raymond here i am so exci",
"nd i hope to see you in this next one\n\n\nSPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she",
"o we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great",
" cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by t",
"s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i a",
" that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here t",
"about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very",
"he symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early th",
"as busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling ur",
"rience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i ",
"ally sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to",
"s and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that ",
"ate fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely",
"trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was ",
"ial me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of",
" around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nS",
"al symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because alt",
"st really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assa",
"any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom ",
"e whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathi",
" my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the",
"ith any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinki",
"h that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can",
"well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he",
"mber particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really y",
"e actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sent",
"astated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe di",
"on\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu ",
"unds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know ",
"d usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practi",
"ecame the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty differen",
"an like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on ",
"that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willi",
"ich really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral int",
"ogists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after thos",
"as going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant fo",
"elped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go bac",
"ome of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep t",
"ry kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief t",
"rting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a l",
"ry but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was ju",
"t died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going o",
" lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the ",
"ervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that yo",
"were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think tho",
"eling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depressio",
"ust sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is t",
"member just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot o",
"ialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although docto",
" most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s som",
"is is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual conne",
" i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was abl",
"ke there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how y",
"i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i ha",
"was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan al",
"really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable bu",
"osh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or a",
"n you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked",
"ere was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of",
"ust sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought the",
"now really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and",
"ement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think yo",
"th the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re ",
"perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us eve",
"e someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly ",
"ress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise",
"have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or ",
"cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight eve",
"ese interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just i",
" to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like",
"nd even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you kno",
"i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet ",
"and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you ",
"0: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not ",
"g asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEA",
"d ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i ",
"rst five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility",
"i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i m",
"oy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep al",
"e not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature whic",
"ng to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle becau",
"he thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what",
" really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like",
" totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these r",
"supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually en",
"ning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and",
"as like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject an",
"tually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb afte",
"so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to ",
"ay my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because",
"from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got m",
"stume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with",
"tside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that soun",
"i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be inte",
" still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been s",
" nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this ",
"e physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating",
"so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability an",
"ody it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i",
"i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation a",
"c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all",
"\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually ",
" total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want pe",
"n now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been sa",
" and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she",
"uldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigi",
" how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so ",
"his conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believ",
"en through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you w",
"t least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAK",
"appening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and ",
"erapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was litera",
"rain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous ",
"it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me ",
"y brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i ",
"ld recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it",
"e times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredibl",
"ot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intoler",
"and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started tryi",
"and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m t",
"ous amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay ",
"e and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff st",
" like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical sy",
"tly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but",
" that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger b",
"e brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner wh",
"so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for ",
"s as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see",
"ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our en",
"n\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to ",
" or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean tha",
"ourse this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself bu",
"people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s li",
" know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself inc",
"hat because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so",
"xist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m ",
"k is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are ",
"r we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master co",
"ery clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight an",
"o into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to ",
"too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like t",
"believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority ",
"prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like g",
" that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thi",
"n think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what ",
" to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormon",
"ght if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv n",
"hing stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i thi",
"ience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about",
"m fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chr",
"e but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to peo",
" that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that",
"letely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other thin",
"g similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was ",
"ntioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey ",
"ut john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t",
"ually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very ",
"think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing be",
"nd\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i thin",
" like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was thi",
"emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re deali",
" home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and",
"ven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life l",
"atigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that ",
"yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even ne",
"f my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i wo",
"e fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining y",
"i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that th",
" habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable h",
" would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half",
"en i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterat",
"oing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honest",
"ese things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on act",
"h once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i coul",
"cause your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into t",
"g with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that i",
"people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus",
"nally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really sc",
"so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or",
"at\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotte",
"es take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it",
" sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that",
"ling what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with my",
"ed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people a",
" know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKE",
"ou think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he ",
"e personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things fo",
"escribes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those ",
"ressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we",
"d also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with ",
"becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubin",
"im up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other p",
"k with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frus",
"d some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was ",
" anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i w",
" this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do a",
" i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start",
"tta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or tha",
" but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened",
"matic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in w",
" again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more wri",
"really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know ",
"ke you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and",
"e this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know ",
"ally like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize ",
" lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is m",
"he blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger an",
" so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bo",
"y about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalit",
"KER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving",
"ncredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you g",
"you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really sympt",
"ch was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark",
"and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so i",
"y a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would t",
" overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of",
"eived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still lov",
"eling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally no",
"e just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to ",
"ful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i",
"\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it co",
"reer which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027",
"ur path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single",
"ed to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey ",
" were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just",
" away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like",
"m in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i",
"grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t underst",
"fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self comp",
"then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of givi",
"ing to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an en",
"k unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years b",
"ion has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn",
" like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have ",
" was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken",
"ve to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eight",
"was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it ",
"ce class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question li",
"\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciatio",
"e there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really ",
"ight taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKE",
"really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a whil",
"ttle things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where ",
"good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean r",
"ears if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your vid",
"ut i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a l",
" such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learne",
" feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is be",
"t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was ",
"ssions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i",
"ime i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred a",
"that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds ",
"rs i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the scien",
" to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a coupl",
"mber of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but ",
"e generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures ther",
"rything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that",
"t it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this appro",
" is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light b",
"ee if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the sympt",
"the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with pe",
"edge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it",
" healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation",
" either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn ",
" my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining ",
"t there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medi",
"the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSP",
"AKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSP",
" you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in i",
"you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially whe",
": it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel an",
"would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover",
"e people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incr",
"o much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in so",
"lly amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i ha",
" because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of ",
"u can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge soci",
"st fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encou",
"n so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re inter",
"ke sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one",
"ou joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for do",
"think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the suppor",
"_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward ",
"ll right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching",
"your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in ",
"or watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n\n\nSPEAKER_00: hey guys having talked to over a hu",
"ching and i\u0027ll see you in the next video\n\n\nSPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i\u0027ve learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are i",
"ely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today\u0027s interview is an example of just that hi everyone i\u0027m ralan if you\u0027re new here welcome on this channel we explore recovery strategies and share real life storie",
"new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i\u0027m super excited to have kelly with us t",
"cover what helps most people regain their health i\u0027m super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let\u0027s dive in and hear about her incredible journey and how she went",
"or a full marathon so let\u0027s dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take ",
"ank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am ",
"o notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn\u0027t have the motivation to go out and do as m",
" i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was h",
" not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing thi",
"rk came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was g",
"ame thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn\u0027t have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: ok",
" sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and",
" so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay",
"s but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i\u0027ve had jason on the channel before that\u0027s jason mctiernan\u0027s program correct i can thrive yeah i\u0027ve interviewed a lot of people actually on the channel who have gone through his program and have recovered and",
"of people actually on the channel who have gone through his program and have recovered and interviewed him himself he\u0027s a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: i",
" do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you\u0027re going through and imagining yourself at ease in a situation and trying to bring that into",
" going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i\u0027m by mys",
"ade a difference and i could use all these little techniques in situations when i\u0027m by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this b",
"ER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which ",
"ike this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i ask",
"zation and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or som",
"grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we\u0027re in right now understanding healing and symptoms so once you started doing the program how quickly did you start to s",
" healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six m",
"i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you\u0027re even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ra",
"bout that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i\u0027m training for a full marathon with some of my friends and before i don\u0027t think i would hav",
" training for a full marathon with some of my friends and before i don\u0027t think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these",
"om fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it\u0027s a horrible thing to go through but thankfully there\u0027s a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your li",
"s out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves",
"with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn\u0027t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that\u0027s more of",
"isempowering but instead you could say i am on my way to getting better and that\u0027s more of a journey rather than oh i\u0027m stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the ",
"mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it\u0027s meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in ",
"ms or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you\u0027re going through the program if someone\u0027s watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program c",
"ing oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you\u0027ll start to meet with jason more frequently and he will guide you through the meditating process you also have acc",
"son more frequently and he will guide you through the meditating process you also have access to the resources so there\u0027s online videos that he\u0027ll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying",
"ersonable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great and it\u0027s just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you sai",
"u that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he\u0027d give you free copies over email and just pointing you to different authors that have simil",
"give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program\u0027s working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there\u0027s s",
" you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there\u0027s still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools to pas",
" i\u0027m still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that\u0027s a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because t",
"it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we\u0027re going to keep going to keep having sym",
"s and we want those things to keep working so we\u0027re going to keep going to keep having symptoms and different things in our lives to let us know what\u0027s going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i\u0027ve got the tools i ",
"eeling not scared of that because if something does pop up like okay i\u0027ve got the tools i know what to do i can get past it yeah so for you have anything that you\u0027d want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything",
"now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you\u0027d say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you\u0027re feeling even if you haven\u0027t found any doctors or any social support that has the same exp",
" feeling even if you haven\u0027t found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they\u0027re facing and this program truly could help all you need really is to be pointed to the right resources and you know jus",
"ly could help all you need really is to be pointed to the right resources and you know just like jason he\u0027ll always tell you that you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been like you\u0027re on the right path to recovery\n\nSPEAKER_00: amazing well i\u0027m so so h",
"ou\u0027ve been like you\u0027re on the right path to recovery\n\nSPEAKER_00: amazing well i\u0027m so so happy for you kelly this is incredible i\u0027m happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to peopl",
"ere i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it\u0027s always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the ",
"times sounds like yours is you know i always say radical success is the exception not the norm so you know don\u0027t want people watching to feel discouraged if their recovery doesn\u0027t happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging",
"rall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to",
"y i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you\u0027re interested in learning more about jason mctiernan and his program i can thrive we\u0027ll put a video here to help you get a better sense of what that\u0027s all",
"gram i can thrive we\u0027ll put a video here to help you get a better sense of what that\u0027s all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n\n\nTr",
"ething out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n\n\nTranscripts from https://www.youtube.com/c/RaelanAgle\n8 patients who have recovered from CFS/ME and Long COVID talk about their illness.\n\nSPEAKER_00: what percentage of chronic debilitating symptoms are alleviate",
"their illness.\n\nSPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensation",
"ought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing s",
"ause i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of t",
"ing with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoile",
"ually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle ",
"we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help e",
"recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating roo",
"rs as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were ",
" to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious ",
"to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me c",
"approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something ",
"xhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_0",
"u here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all",
"this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically pra",
" to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge ",
" practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety an",
"en know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reacti",
" and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can",
"different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this ou",
" of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you",
"ds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psycho",
"tic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i n",
"two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a sc",
" it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day ",
"it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: wa",
"he spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medication",
"ee a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times t",
"s there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but ",
"feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my",
"t twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i ju",
" of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hun",
"n and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story s",
" doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually c",
"ng we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that",
" surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started",
"ist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned ",
"you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flig",
" in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and an",
"er you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and",
"of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in",
"y and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to c",
" bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress",
" cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic d",
"in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders r",
"epression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of i",
"s brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest ",
"ine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops",
"y in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain",
"reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so valida",
"ER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you ",
"spective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the ",
"ng how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so ",
"ery very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and rerou",
"se where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devasta",
"e being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some",
" i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in th",
"s of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and th",
" physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s ",
"y breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to ",
"y physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a",
"d not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many pe",
"se so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as",
"ad to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually",
"e is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body",
"ology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just calle",
" when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t fi",
" practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you h",
" it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of s",
" of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you k",
"d is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you",
"lood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone",
"five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear bu",
" theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so ",
"s stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s g",
"\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and",
" disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s livin",
"stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts ",
"n to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be",
"eactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and ",
"ad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down ",
"ted just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it ",
"possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way",
"ng as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforc",
"active is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have",
"ally occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of t",
" i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatev",
"so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all ",
"to your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous ",
"ifferently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interv",
" on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which yo",
"erent tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physio",
"iscuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s",
"al care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actua",
"in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re ",
"people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or d",
"d the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the b",
"t with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my ",
"fth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the ner",
"ggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or ",
"nd exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s wher",
" to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause",
"tput and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a gar",
"auses and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really reall",
"e to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play i",
" day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase yo",
" they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been work",
"ere\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going",
" moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself",
"ly symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by",
" my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think thoug",
"u know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been",
" up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m go",
"ery day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treati",
"debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for ",
" pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain cent",
"ng backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes c",
"but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still",
"ely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re",
"g all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze",
"y information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of thes",
"fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens ",
"re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms t",
" here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but ",
"not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re",
"ges every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so th",
"ou want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehen",
" anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight",
"se when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he ju",
"i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it ",
" is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state befo",
"u have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question w",
"oing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to",
"hings we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the uncon",
"d you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analy",
"ul because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent",
" not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain ",
"e unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want ",
" brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so",
"e that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that thi",
"ut loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have though",
"ngerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted t",
"e you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition ",
" really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious",
"our threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you kno",
" fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unp",
"a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different trigger",
"nal and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional",
"n the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destru",
"e percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal we",
"gative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the ",
"and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappe",
"and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest rive",
"e thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angr",
"happy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard ",
"houghts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from",
"say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is th",
"ght separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people",
"input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really",
"rwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts i",
" discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discu",
"n not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027r",
"so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our",
"do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance ",
"er creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or rut",
"ess negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with ",
" of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the chal",
"treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a",
"ou mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe an",
"y is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you ",
"at is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy",
"lked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got you",
"e negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not t",
"l your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that tak",
"ng of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and ",
" an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of mov",
"people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends",
"chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by",
"so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a",
" learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional ",
"re and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig",
"essional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought pat",
"tle bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027",
" patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again",
"spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so",
" is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that opera",
"depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better ",
"t i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going differ",
"ing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if",
"t\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if ",
"way there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self",
" about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that",
" then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten per",
"n for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to lear",
"ing what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we pu",
" in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey di",
" in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it a",
" day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is ve",
"ll and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get yo",
"tween the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for ",
"eo description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those lin",
" for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this an",
"there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really vali",
"creen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told",
"es of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good fri",
"but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00:",
"y academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourse",
"ally changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPE",
"y valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n\n\nSPEAKER_00: do you know which book has been menti",
"ed interview with dr howard schieffner\n\n\nSPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phe",
"\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video w",
"book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can ",
"nic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health iss",
"da from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he n",
"urgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you t",
"it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own ",
" that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy",
"treme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to ",
" to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think tha",
"r years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would c",
"you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much ",
"dn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nu",
"ith anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an ad",
" you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do th",
"ack and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do",
"d okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something ",
"tion and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologi",
"the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures a",
"stp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure p",
"chogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot",
"teners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opene",
"R_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite se",
"that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i do",
"a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back ",
" was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gra",
"ct that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really ",
"t\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but d",
"ost people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re s",
"ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren",
"or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was re",
"t\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches",
"e fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really r",
" this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambi",
" they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and ",
"ryone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it bu",
" i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know ",
"ell sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have t",
"ith it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one",
"t way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process",
" why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the b",
"miliar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range o",
"idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to ",
"emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies som",
"d some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if y",
" we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselv",
"ntire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really ",
"his fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful de",
"w probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our ",
"d of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not b",
" varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physica",
" themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen h",
"really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the fin",
"ut someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with bac",
"auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage",
"e amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your",
"rm\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah mo",
"perience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patient",
"s can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some o",
"trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through ",
"efenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in",
"ple that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talk",
"more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the",
"ou talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tigh",
"n the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward of",
"ow they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about th",
"t really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand",
"h someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroo",
"ave to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you sa",
"t happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with",
"ard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants ",
"llowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they ",
"g clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a ",
"l have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in",
" its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain sho",
"or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this ",
"irst two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with ",
"sing it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called ",
"uickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily becaus",
"uickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so y",
"ple i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01:",
"work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but ",
"hat this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are",
"ith long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own proce",
"yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m trai",
"e change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can y",
"lls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and sta",
"e there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better",
"nce shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research i",
"esn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to en",
"idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of th",
"1: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that the",
"ifferent and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk ",
"y approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change y",
"easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the ",
"e work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we w",
"ulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because t",
"al with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do loo",
"ou would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of",
"ect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was ",
"physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physica",
"n it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients ",
"here they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in",
"ame you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the th",
"it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more di",
"at people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that",
"hat\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already",
" about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at ",
" time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with so",
"g this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i re",
"d helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional",
"real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what qu",
"u for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and ",
"a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summari",
"in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to t",
"link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
" see you in this next one\n"
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"quote": "\u0027...the minute i stood up i just couldn\u0027t do anything i just drained of energy completely\u0027",
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they u"
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses bec"
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"llm_explanation": "Yes, text 1 is contained within text 2. Specifically, text 1 is a direct excerpt from the longer narrative given by SPEAKER_01 describing their experience with ME/CFS, including the part about walking ten miles every day, picking up viruses, and the inability to get out of bed.",
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"quote": "\u0027...walking like ten miles every day ... i picked up a couple of viruses ... can\u0027t get out of bed\u0027",
"source_doc": "bRidO1PiZJs.txt",
"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": " like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which"
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "oke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah"
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"llm_explanation": "Text 1 is a short quote about waking up early to go walking despite tiredness, which is a sentiment expressed by the speaker in Text 2 (Irene) when she talks about waking up at five o\u0027clock and going for a walk even though she was very tired. So yes, Text 1 is contained within the content and theme of Text 2, as it reflects part of Irene\u0027s experience shared in the interview.",
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"quote": "\u0027i wouldn\u0027t let myself not go ... i\u0027d wake up at five o\u0027clock ... just went walking\u0027",
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at"
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"quote": "\u0027then i couldn\u0027t do anything for myself ... had to lie down because no energy to cook\u0027",
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "stage where then i couldn\u0027t really do anything for myself you know so once i got back i"
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"llm_explanation": "Text 1 contains two sentences about making life changes and life needing to change. In Text 2, a similar sentiment is expressed by speaker_01 when discussing having to make life changes and accepting a new way of living with ME/CFS. Specifically, speaker_01 says, \"...I\u0027m not going to give into it but I am going to have to make life changes... my life is going to have to change.\" This matches the idea in Text 1 almost verbatim. Therefore, Text 1 is contained within Text 2.",
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"quote": "\u0027...i am going to have to make life changes ... my life is going to have to change\u0027",
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "ng it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what "
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00"
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": " and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that"
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"quote": "\u0027...contacted jason and went onto his program because it actually really made sense\u0027",
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "ck sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found "
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"quote": "\u0027if my phone rings i let it go to voicemail so i can deal with it when i want to\u0027",
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": " where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to"
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
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"quote": "\u0027...i\u0027m not good at relaxing ... people say do meditation ... i just struggled with it\u0027",
"source_doc": "ba2LcetNybI.txt",
"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "had a hard time with soy and so i struggled with some of those components of it"
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": " that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not g"
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to"
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"llm_explanation": "Text 1, the phrase \"when somebody minimizes it you can think no,\" is contained within Text 2. It appears towards the end of the interview conversation where the speaker discusses struggles with others minimizing their condition.",
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"quote": "\u0027...when somebody minimizes it you can think no\u0027",
"source_doc": "bRidO1PiZJs.txt",
"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "ou know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportiv"
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": " gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes wel"
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "e up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probab"
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"quote": "\u0027...i\u0027ve learnt to listen to myself listen to my body ... work out what my triggers are\u0027",
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": " go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme wi"
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"quote": "\u0027i can stop myself before i actually get to the stage where i\u0027m really pushing boundaries\u0027",
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"source_doc_content": "SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i\u0027m here with irene o\u0027brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i\u0027m excited to see that once again we have so many examples that it\u0027s never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank\n\nSPEAKER_01: you very much for having me yeah you help anybody\n\nSPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you\u0027ve persevered through people watching a solid half hour of technical problems that were my fault\n\nSPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn\u0027t give up so you\u0027ve had quite the journey with this so tell us about that\n\nSPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o\u0027clock in the morning and i\u0027d be awake at five and just on the go but i had lots of energy so it didn\u0027t matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don\u0027t know what\u0027s wrong with me i just can\u0027t go any further and i stopped at my friend\u0027s house and she said to her i just don\u0027t know what\u0027s wrong with me i\u0027m i just can\u0027t do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i\u0027ll go and bake a cake the minute i stood up i just couldn\u0027t do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you\u0027ve got yuppie flu as it was called\n\nSPEAKER_01: and all you need to do is exercise and eat well and that\u0027s fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can\u0027t get out of bed i can\u0027t do this again i\u0027m back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i\u0027ve got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic\n\nSPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there\u0027s a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn\u0027t do a long walk i would walk up the steps to the top it\u0027s about maybe i think it\u0027s two hundred meters or so the top ascent but yeah even when i was tired i wouldn\u0027t let myself not go i\u0027d wake up in the morning at five o\u0027clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i\u0027d had anything to drink or eat or anything i just went walking i\u0027d be back by seven eight nine o\u0027clock sometimes have a shower and of course i got to the stage where then i couldn\u0027t really do anything for myself you know so once i got back i just had to lie down because i couldn\u0027t i didn\u0027t have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn\u0027t then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o\u0027clock in the morning and i got to a certain place and i thought i don\u0027t sit down i\u0027m going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can\u0027t stay here as i\u0027m sort of halfway up the hill well three quarters of the way up the hill if i don\u0027t go up i can\u0027t go down and i\u0027ve got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don\u0027t know what\u0027s wrong with me i mean i you know i knew i had me but i had shelved it i just wasn\u0027t going to have it and they just sort of said well no there\u0027s nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there\u0027s not much we can do you\u0027ve got kind of learn to live with it you\u0027ve got to just pace yourself do what you can\n\nSPEAKER_01: but i\u0027ve never been one to actually accept that that\u0027s going to be the rest of my life because at that stage i wasn\u0027t able to do anything i mean showering was something that i did if i\u0027d saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me\n\nSPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i\u0027m feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn\u0027t really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered\n\nSPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don\u0027t know whether i\u0027m just lazy or whether it\u0027s just that i just didn\u0027t have the energy to actually do all the things that one\u0027s supposed to do to try and get better you know i\u0027d read a few books as i get halfway through and then i just i just can\u0027t do that i try a different way of eating and then it would just be too much it\u0027s just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it\u0027s all on my brain it\u0027s\n\nSPEAKER_01: and i was not impressed i thought no i\u0027m going to find somebody else to watch because raylan\u0027s gone to the other side you know\n\nSPEAKER_01: to say it\u0027s all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you\u0027re saying is it\u0027s not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again\n\nSPEAKER_01: because your brain is stuck in that flight or flight mode and that\u0027s just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you\u0027re going to overdo it if you know what i mean does that make sense\n\nSPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you\u0027re stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that\u0027s stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was\n\nSPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it\u0027s something i could do for quite a while i\u0027ve been looking for something you know that i can do that i know i\u0027ll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i\u0027ve never ever thought i\u0027m not going to get better you know i\u0027ve always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don\u0027t think you can be healed from it i think you can go into what do you call it remission yes remission that\u0027s it and i don\u0027t think you ever get healed from it i think my mindset\u0027s not changed and i think you can actually be healed from it yeah and in the process i mean i\u0027ve learnt to listen to myself listen to my body i think that\u0027s so yes there\u0027s been a lifestyle change in a way i\u0027ve had to it\u0027s been a journey of getting to know myself work out what my triggers are and i think that\u0027s that\u0027s been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you\n\nSPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i\u0027m sure you had days where you weren\u0027t like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that\n\nSPEAKER_01: mindset i\u0027m just a very positive person i think i\u0027m also obstinate\n\nSPEAKER_01: you\u0027re not going to tell me how i\u0027m going to be for the rest of my life\n\nSPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i\u0027d go to the doctor and say well i\u0027m really struggling but you do know you have me don\u0027t you yes well i do but yeah well okay fine\n\nSPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance\n\nSPEAKER_01: be part of it\n\nSPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you\u0027re like yeah i think i\u0027m pretty much fully here back\n\nSPEAKER_01: well it didn\u0027t take long it didn\u0027t take long at all i think like i was getting to the stage of my illness where i thought i\u0027m not going to give into it but i am going to have to make life changes i can\u0027t carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that\u0027s sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there\u0027s quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i\u0027m not good at relaxing i\u0027m really really not good at relaxing so i\u0027ve always found that a struggle you know people say do meditation and this meditation is something i just\n\nSPEAKER_01: i\u0027ve always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i\u0027ve got into it probably about two weeks i could feel the difference\n\nSPEAKER_01: it was quite quick but it\u0027s been while longer that it\u0027s taken me to yeah to get back to knowing that i\u0027m fine now i\u0027m fine i still have my days when i\u0027m tired get me wrong but then i know i\u0027ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i\u0027m tired so i think i\u0027m going to get off here because i can get home in half an hour otherwise if i carry on on this path\n\nSPEAKER_01: it\u0027s going to be another at least two hours before i get home so i was able to stop myself from that no i\u0027m doing this because that\u0027s what i set up to do so you know i think it\u0027s things like that\n\nSPEAKER_00: yeah i think it\u0027s really like the brain training continues even once you\u0027re in that recovery phase because all of those old habits and personality traits are there it\u0027s pretty ingrained it\u0027s you think it\u0027s just knowing that it\u0027s not good for you i was naive that\u0027s what i thought i\u0027m like okay i\u0027ve seen the light this isn\u0027t the way you\u0027re supposed to live i\u0027m going to do better and then i thought i could just flick a switch and be a whole new person\n\nSPEAKER_00: and it\u0027s still something that i\u0027m working on\n\nSPEAKER_01: i think you do it\u0027s something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that\u0027s quite a common theme so there\u0027s things i\u0027ve had to put in place where you know like if my phone rings i let it go to voicemail if it\u0027s not you know if it\u0027s one of my children obviously i\u0027m not going to do that but they might be watching\n\nSPEAKER_01: you guys just everybody else\n\nSPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that\u0027s something i\u0027m not i know i\u0027m not good at is when something comes up and people ask me to do something they don\u0027t expect you to do it now they\u0027ll say at some stage could you do this that doesn\u0027t work for me if you\u0027ve given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i\u0027ve got the time and i feel like doing something so it\u0027s yeah it\u0027s it\u0027s learning boundaries\n\nSPEAKER_01: the hardest for me was learning boundaries\n\nSPEAKER_00: boundaries with ourselves and with everybody else\n\nSPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you\u0027re well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i\u0027m like oh i\u0027m a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that\u0027s not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i\u0027m like real rest and i\u0027m just trying to kind of retrain that habit of like this is a good thing you healthy people do this\n\nSPEAKER_00: yeah i\n\nSPEAKER_01: think that is important i\u0027m not good at resting i really am not as you say i\u0027ll sit there for a bit and then i think let me just see what\u0027s on my phone you know just\n\nSPEAKER_01: let me just check facebook\n\nSPEAKER_01: you really don\u0027t need to\n\nSPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i\u0027m not in the morning when i\u0027m awake and i feel like getting up then i can look at my phone\n\nSPEAKER_01: yeah it is it\u0027s training yourself all the time realizing what put you where you were and then going forward\n\nSPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like\n\nSPEAKER_01: well i mean my my family have been very supportive obviously they\u0027ve seen me at my worst they said to me i even look better you know they can\u0027t believe the difference and how much better i look obviously i\u0027m able to do things i\u0027m not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it\u0027s made and they understand the whole thing behind it so they actually\n\nSPEAKER_01: people that don\u0027t really get it the people who never got the cfs in the first place you know the people who\n\nSPEAKER_01: mustn\u0027t isolate yourself no no no you\u0027re doing this all wrong because you\u0027re becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn\u0027t have the energy to do anything else so they never understood it then they certainly don\u0027t understand it now\n\nSPEAKER_01: maybe if you had done more you would have got better quick because they didn\u0027t understand it in the first place\n\nSPEAKER_00: yeah i think there\u0027s just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is\n\nSPEAKER_01: that i do have to at the moment try and control my wouldn\u0027t say temper\n\nSPEAKER_01: i can flare up when people say silly things sometimes\n\nSPEAKER_01: why do i need to worry because i don\u0027t really care what people think to be honest i don\u0027t but then sometimes i will just flare up when somebody says something that clearly shows you don\u0027t understand\n\nSPEAKER_01: why are you even pretending to try and understand when you\u0027re not even you\u0027re not\n\nSPEAKER_01: you know and that\u0027s something i struggle with but i\u0027ll get\n\nSPEAKER_00: i think that\u0027s pretty normal i suspect virtually all of us have our limits where we\u0027re like okay my patience is gone my acceptance is gone\n\nSPEAKER_01: what\u0027s wrong with you\n\nSPEAKER_01: but yeah i\u0027m not used to being to flaring up with things\n\nSPEAKER_01: but i think it\u0027s because i know i know what i\u0027ve been through my family know what i\u0027ve been through when somebody minimizes it you can think no\n\nSPEAKER_01: you know it is hard it is hard for anybody who\u0027s been through that gone through it\n\nSPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they\u0027re like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don\u0027t know what i\u0027ve been through it was a nightmare it was but it\u0027s just\n\nSPEAKER_00: i don\u0027t think we\u0027re ever going to escape it\n\nSPEAKER_01: you just have to let it go it doesn\u0027t matter\n\nSPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it\u0027s not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible\n\nSPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know\n\nSPEAKER_00: yeah i just there\u0027s so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it\u0027s a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i\u0027m sending massive hugs to you keep at it you have totally got this don\u0027t give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching\n",
"span_text": "ve overdone it you know so i now can stop myself before i actually get to the stage where i\u0027m really pushing pushing boundaries you know i"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"quote": "\u0027...people want to compare their symptoms against mine... to see if we\u0027re the same...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
},
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"quote": "\u0027...don\u0027t get too caught up on comparing symptoms...\u0027",
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
},
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"llm_explanation": "Text 1: \u0027...symptom management that i did was more palliative not about recovery...\u0027 is a phrase found verbatim in Text 2, spoken by SPEAKER_00, describing their experience with symptom management during recovery from chronic fatigue syndrome/MECFS.",
"llm_is_contained": true,
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"quote": "\u0027...symptom management that i did was more palliative not about recovery...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
},
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"llm_explanation": "Text 1, which mentions taking painkillers or seeing a doctor for sedatives if experiencing pain, is indeed contained within Text 2. Text 2 includes a detailed conversation about chronic fatigue syndrome and mentions the approach of managing symptoms with painkillers and prescribed sedatives as part of symptom management rather than full recovery.",
"llm_is_contained": true,
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"quote": "\u0027...if i had pain i might take painkillers or see doctor for sedatives...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
},
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"cosine_similarity": 0.31300036494477607,
"global_end": 31590,
"global_start": 31290,
"llm_explanation": "Text 1 contains phrases about spending thousands of hours googling symptoms and almost poisoning oneself by buying organic elderberries. Text 2 includes similar statements and expands on the experiences related to chronic fatigue syndrome (ME/CFS), including the speaker\u0027s story of researching symptoms extensively and experiencing challenges like using elderberries incorrectly. Therefore, Text 1 is contained within Text 2 as part of the speaker\u0027s narrative.",
"llm_is_contained": true,
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"quote": "\u0027...spent thousands of hours googling symptoms...\u0027, \u0027...almost poisoning myself by buying organic elderberries...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
},
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"global_end": 31590,
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"llm_explanation": "Yes, text 1 (\u0027...needed a more comprehensive strategy rather than symptom by symptom fixes...\u0027) is contained within text 2. In text 2, one of the speakers explains that targeting specific symptoms in isolation was never a complete healing method and that a more comprehensive, holistic approach was necessary for recovery from chronic fatigue syndrome/MECFS. This matches the concept expressed in text 1.",
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"quote": "\u0027...needed a more comprehensive strategy rather than symptom by symptom fixes...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
},
{
"bm25_ratio": 1.0040525936163134,
"bm25_score": 4.575674136370982,
"cosine_similarity": 0.30310561501487704,
"global_end": 31590,
"global_start": 31290,
"llm_explanation": "Text 1 (\u0027...have boundaries ... not talking about old symptoms ...\u0027) is contained within Text 2. Specifically, in Text 2, SPEAKER_01 mentions having boundaries and choosing not to talk about old symptoms with other people, which aligns with the phrase in Text 1.",
"llm_is_contained": true,
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"quote": "\u0027...have boundaries ... not talking about old symptoms ...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"llm_explanation": "Text 1 is a short personal statement about the difficulty and trauma of writing a recovery story. Text 2 is a long transcript of a discussion about chronic fatigue syndrome (ME/CFS), symptom management, recovery perspectives, and personal boundaries related to sharing illness experiences. Text 1 content is not explicitly contained in Text 2, but Text 2 includes a related mention of writing a recovery story being traumatizing, similar to Text 1\u0027s sentiment. So, Text 1 is not fully contained in Text 2, but the idea is referenced.",
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"quote": "\u0027...writing my story took forever because it\u0027s traumatizing going back...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"quote": "\u0027...i have to catch myself and be like you are a walking miracle like this is incredible\u0027",
"source_doc": "ba2LcetNybI.txt",
"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that"
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"quote": "\u0027It\u0027s like being like when you watch a six year old wandering...\u0027",
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"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "eah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i "
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"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "on\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would g"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"quote": "\u0027...diagnosed with fibromyalgia ignoring fatigue... no treatment for many years...\u0027",
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
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"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "hing was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lo"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"quote": "\u0027...mitochondrial disease called mitochondrial dna depletion syndrome...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
},
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"llm_explanation": "Text 1 (\u0027...put on cocktail to boost mitochondria and fight infections...\u0027) is not contained within Text 2, which is a long dialogue about chronic fatigue syndrome (ME/CFS) focusing on symptom management, recovery, and the experience of the illness rather than mentioning any specific treatments or cocktails.",
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"quote": "\u0027...put on cocktail to boost mitochondria and fight infections...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
},
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"llm_explanation": "Text 1 is not contained within Text 2. Text 1 is a short phrase about changing diet using food as medicine, whereas Text 2 is a lengthy transcript about experiences and views on chronic fatigue syndrome or ME/CFS, focusing on symptoms, recovery, and holistic healing without specifically mentioning the phrase from Text 1.",
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"quote": "\u0027...dramatically change diet using food as medicine...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
},
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"llm_explanation": "Text 1, which mentions removing toxic ingredients and using water filtration, is not contained within Text 2. Text 2 is a detailed discussion about chronic fatigue syndrome (ME/CFS), symptoms, recovery experiences, and the importance of a holistic approach, without any mention of removing toxic ingredients or water filtration.",
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"quote": "\u0027...removed toxic ingredients and used water filtration...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
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"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": " then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a "
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"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"quote": "\u0027...couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed...\u0027",
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "herapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027"
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"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know"
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"llm_explanation": "Yes, text 1 is contained within text 2. In text 2, Katie mentions that she keeps reminding herself that the symptoms she experiences during her pregnancy, like fatigue or headaches, are normal symptoms and not necessarily a relapse of her chronic illness. This matches exactly with text 1\u0027s statement.",
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"quote": "\u0027I keep reminding myself these are normal symptoms... fatigue or relapse?\u0027",
"source_doc": "ba2LcetNybI.txt",
"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "really are so many people that are getting past these things and i just i don\u0027t think we"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
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"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00"
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"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "ook years it was like going to getting a bachelor\u0027s degree and chronic illness so"
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "d not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low an"
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "still at university so initially i didn\u0027t really have anyone there other than my family and"
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "i mean it is a journey but can be very tough tough tough experience becoming"
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah"
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"quote": "\u0027...perhaps meditation and yoga can help me heal\u0027",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on"
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"quote": "\u0027...felt different after doing alternate nostril breathing\u0027",
"source_doc": "acWL9FBKr3o.txt",
"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that"
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"quote": "\u0027...flew to america to work with healer\u0027",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew"
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there"
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": " connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a p"
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing"
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "t of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspe"
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "of like pre menopausal symptoms even though i was so young so that\u0027s kind of"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "feeling like this was just this death sentence but in a way a life sentence that i"
},
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": " get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "collaboration in my healing because otherwise i was resenting it and i and i just i think those"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "with her she said rebecca you\u0027re not sick you know and i think she kind"
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"quote": "\u0027...brain generates pain fatigue because it senses danger\u0027",
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "and it generates pain as well as fatigue because it senses danger but that danger can be psychological"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "like perfectionist check right people pleasers check maybe you\u0027re doing things for"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "psychotherapy was helpful just to kind of talk through some of these some of these griefs"
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_01: hey guys if you\u0027re struggling with the overwhelming challenges of chronic fatigue please know that you\u0027re not alone and what\u0027s even more important is to know that there is a way out many people have recovered from this and are now thriving hi everyone i\u0027m raylan if you\u0027re new here welcome on this channel we share insights knowledge and resources that we have learned to be helpful with conditions like mecfs and long covid so how do we know these things we\u0027ve learned it from the more than a hundred and fifty recorded recovery interviews right here on the channel i\u0027m excited to have frances goodall with us today all the way over in sheffield in the uk francis has an incredible story of overcoming mecfs and has used her knowledge to help others to also return to living fully like she does today as a working mom and an outdoor enthusiast who has even completed three half marathons so let\u0027s dive right in and welcome francis francis so amazing to have you here thank you for doing this today oh thank you for having me on your wonderful channel so take us back what was happening around the time when you first became unwell\n\nSPEAKER_00: so when i first became unwell i was quite young i was only nineteen i was at university and i was doing all of the things you know i had a job i was studying hard i joined all the different societies i possibly could join and you know developed a new friendship group and was going out a lot and then suddenly one day i was on my way to do some voluntary work and i just yeah just didn\u0027t feel well at all didn\u0027t know what was going on felt a bit fluy felt a bit strange felt a bit scared because it felt really weird and then yeah that was the start of it really i ended up not being able to continue my university studies ended up having to come back home and live with my mom and i think it probably took about six i think it took six months to get a chronic fatigue or me diagnosis\n\nSPEAKER_01: yeah you can tell when someone went through this a while ago you know it wasn\u0027t last year the year before because i feel like we developed this ability to just zoom through that one of the most intense experiences of our life like yeah so i became unwell and then i had to drop on a university\n\nSPEAKER_01: you know that had to be a really scary thing at such a young age you know when you got started not feeling well and didn\u0027t get better what were you thinking\n\nSPEAKER_00: yeah i was well i also got i had a doctor wanted to diagnose me as being depressed not being the main issue as well like very early on but i knew it wasn\u0027t just depression i knew there was emotion about feeling unwell and you know i was emotionally challenged by that was probably getting depressed by that but i knew there was something else going on so yeah it was really scary time definitely a time that i feel like i\u0027ve grieved and worked with as i healed you know at the other end which is probably why i can talk about it so lightly now but yeah at the time it was really really scary and i didn\u0027t know what was happening i didn\u0027t know what to do yeah and at first i kind of gave up it i went home and was kind of even doing things like watching daytime television and just feeling a bit low and you know all my friends from home had gone to university all my friends from university were still at university so initially i didn\u0027t really have anyone there other than my family and yeah it was a very tough time\n\nSPEAKER_01: so doctors told you that the cause of all this was depression\n\nSPEAKER_00: yeah one of the first doctors said she just thought i was depressed that was it\n\nSPEAKER_01: yeah i think a lot of us hear that and it\u0027s i think a little bit infuriating i can see how they come to that conclusion because we likely are depressed but that wasn\u0027t for most of us the first thing takeaway pitch that was ability to function in the world and anyone\u0027s going to be depressed yeah so what did you do did you just start googling or how did you start to try and figure your way out of this\n\nSPEAKER_00: in the year before i got ill i had also traveled the world before going to university and i had got really interested in meditation and buddhism and yoga a little bit as well so i thought i did think quite early on well perhaps meditation and yoga can help me heal so i did start quite early on doing a little bit of meditation yoga a little bit of breath work like for instance i remember one time doing the alternate nostril breathing and noticing i felt different after doing it so or doing a relaxation oh yeah i often listen to relaxations as well guided relaxations and then doing them sometimes i\u0027d notice i felt considerably better after doing one so that those sorts of experiences quite early on gave me some hope that there was something i could do about getting myself better but often it was just like feeling better for a little bit and then i\u0027d feel much worse again you know so it took a long time to learn to really get a deeper shift or to yeah well took five years to get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027t seem to do anything for me at that point but maybe it just wasn\u0027t the right thing at that point you know but later on i do think acupuncture did help a little bit i\u0027m not quite anything against chinese medicine or acupuncture but it was yeah that didn\u0027t didn\u0027t particularly do anything in those early stages i\u0027m trying to remember i mean i would at some point i started like trying one therapy after another you know i\u0027d go for reiki and i\u0027d go for this and i go for that and you know try different kinds of alternative therapies i went to a nutritional therapist she did colonic irrigation but i didn\u0027t even know apparently i brought in chronic irrigation but she gave me some nutrition advice and i do think i did have a you know like a candida issue as well so that perhaps was somewhat helpful to learn a bit about the body and things like candida imbalances and things like that but at the same time it wasn\u0027t that helpful i don\u0027t think yeah i don\u0027t know that makes sense\n\nSPEAKER_01: irrigation was that like colon hydrotherapy\n\nSPEAKER_00: they put water up you and like flush out your system yeah i\u0027ve never had it done i didn\u0027t go for it but it was so in a way it was kind of funny that i hadn\u0027t even booked in for this session but i didn\u0027t think i had i thought i\u0027d booked in to see a nutritional therapist again because my dad had told me that she\u0027d helped cure someone of chronic fatigue you know so it was like following these different things these different lines of possibility for hope and a cure\n\nSPEAKER_01: i ended up doing colon hydrotherapy as one of the zillion things i tried to get well and did you keep watching if you\u0027ve never tried it you haven\u0027t lived experience fully i think funny though i ended up meeting one of my best friends ever she was my colon hydrotherapist i think you just bond really quickly like you get past all the small talk once you\u0027re anyways it\u0027s the stuff that we all tried well it\u0027s just it\u0027s yeah that level of desperation\n\nSPEAKER_00: as well before even all this you know cold therapy that it\u0027s about these days but back then i remember reading an article about how cold can help me and i\u0027d lying cold baths and i did often feel better afterwards i mean over there lying in a cold bath trying to get myself well yeah it\u0027s quite funny\n\nSPEAKER_01: i know you think about it we\u0027re going through this incredible suffering we have all these scary symptoms and then we\u0027re getting hoses put up our bums and laying in breathing full bath tubs it\u0027s like as if the suffering isn\u0027t enough we just kind of just desperate like okay if it even works for one person i gotta try it it\u0027s amazing that everyone i talked to your mind just suddenly becomes very open\n\nSPEAKER_00: yeah yeah i would try one thing and then the next thing and the next thing and i even flew to america i mean i\u0027m in the uk and i flew to the us to florida to work with a healer that apparently had healed quite a few people of chronic fatigue as well so yeah just like loads of things i was i was so desperate to be well and to figure out what was going on\n\nSPEAKER_01: yeah okay so eventually you did start to find some things that did help so what did that look like\n\nSPEAKER_00: yeah well actually well two years into the illness i was doing a lot of meditation and i had an experience of meditation of a lot of energy flowing through my body and then i felt amazing like i felt like something had shifted but actually i ended up in quite an unstable kind of up and down process for three more years after that but i did think i was cured after two years through this meditation experience which is a bit mad but i was a bit intense about my meditation practice and i think i did have a kind of a release of energy but it was just not sustainable and yeah i still had a lot of things to figure out in myself but the things like towards the end of the recovery journey i read a book on reverse therapy and nickel therapy they were two practitioners i think that around the time they were working together at one point around reverse therapy and then they split off and did their own thing but i think i read both of their books and yeah something in that was like a bit of a light bulb for me about one of the key things i realized in myself was i had a massive pattern of like avoiding conflict at all costs like i could not possibly share something that might upset somebody else so i would just shut down and i think recognizing that pattern was one of the key parts for me to be able to get better and to sustain my health and i also didn\u0027t realize but i had quite a bit of suppressed anger and unresolved trauma in my system that i didn\u0027t realize was there\n\nSPEAKER_00: kind of started to come through in the various workshops and therapy sessions and coaching sessions i had during the five years to try and heal\n\nSPEAKER_01: okay so you mentioned two things there reverse therapy and mcale therapy so the first one reverse therapy what does that look like\n\nSPEAKER_00: yeah they\u0027re very similar i can\u0027t remember the exact difference but it was about looking at symptoms and getting curious about symptoms and what is there an emotion underlying this symptom that\u0027s what i remember from it and starting to like really check in with myself and you know try and be more in tune with what was actually going on for me emotionally and yeah so that was a massive part i mean looking back i do think and all the research i\u0027ve done around trauma i do think a lot of it for me was the impact of trauma on my system manifesting physically like a freeze response i don\u0027t know if you thought your perspective on that kind of stuff is but because even after i got better sometimes i\u0027d go a little bit like a bit fatigue again and then i\u0027d have to kind of work on something and then i\u0027d feel back to normal again so it was yeah for me a lot of it when i look back i think was what\u0027s to do with the freeze response in my nervous system\n\nSPEAKER_01: yeah it\u0027s definitely a theme i couldn\u0027t begin to count how many people who have said something similar in their interview about that being a key piece of their recovery and it seems to be a core component of many recovery approaches like dr john sarno we hear a lot about his tms approach and lots of that theme of it\u0027s so mind blowing to me this is i think one of the most fascinating topics to me is how much those repressed emotions and that unresolved trauma can impact our nervous system and our brain and create all these symptoms and how much so many of us don\u0027t realize in our modern day society that we\u0027re walking around feeling like we are suppressing these things these feelings of anger and rage like i don\u0027t know i need to be a certain kind of person as a woman or a mother or a father or i need to be okay with working seventy hours a week or you know i have shame around this or it\u0027s not okay to feel this way or it\u0027s not okay to express my emotions and just by tampering all that down for all these years you know our system starts to recognize those feelings as scary and bad and it\u0027s fascinating how the body creates all these symptoms as a new distraction or is it because it\u0027s being hypersensitive or whatever the different theories are just understanding that and bringing that into light very impact for a lot of people yes\n\nSPEAKER_00: i mean i have one really strong example where i started to really understand the mind body connection you know i was with a group of people we were doing we were actually doing reiki on each other like a reiki share my boyfriend was there i was making tea for everyone my boyfriend was getting triggered because he thought i was going to tire myself out by doing too much and that he was going to have to pick up the pieces afterwards and then i was getting angry with him because you know because i felt like he wasn\u0027t trusting me and but i think it was just triggering some old stuff as well and then like i couldn\u0027t handle the anger so i remember just being like can\u0027t feel this i don\u0027t know what to do with it so just shut it down but then i could hardly walk and then i had to just lie down on the sofa and then he said something again that triggered me again and i just ran upstairs he said oh see i told you this is going to happen and i was like not because of that it\u0027s because i\u0027ve done what to do with it yeah one moment the next moment i could run up the stairs i was like okay yeah this is really odd yeah what\n\nSPEAKER_01: did that look like for you starting to understand this mind body connection so what does that mean for starting to feel better and come out of this what does that look like\n\nSPEAKER_00: yeah well i think a lot of it looked like learning to be more myself more authentic you know learning to express myself more authentically i remember learning non violent communication so i felt like when i had a bit of a way that i could communicate my feelings without it also being too much for someone else which i think initially because i had been so suppressed things would come out quite strongly at first you know like i remember alex howard i trained with him in coaching and he was talking about the pendulum that can swing from being you know very repressed to then the other way or a pendulum can swing from being one way to the other way and it\u0027s almost like coming back into balance again so i did notice that it was almost like i went from being so suppressed to then quite reactive and then had to learn how to be able to be authentic with people communicate my needs my feelings you know it\u0027s okay to have needs you know all these kind of things and but also to do things like continue to look after myself and you know prioritize time in nature prioritize time with friends prioritize self care as well as you know once i was better start developing my work and stepping into the world of work again after a long time of not being in the world of work but doing it in a way that was you know trying to be as balanced as possible and not too yeah not too out of balance yeah\n\nSPEAKER_01: it\u0027s so interesting that so many of us go on this journey let\u0027s call it i mean it is a journey but can be very tough tough tough experience becoming so unwell and for many people last years it ends up being this teacher about how to like you said be more authentic take better care of yourself it is an amazing teacher and you know most people do come out the other side of it so much happier and more content and at peace and better equipped to deal with their life and their emotions and their health and the world it\u0027s it\u0027s fascinating i don\u0027t think most of us if you told us that coming into it we probably think you were crazy because it sounds even after doing all these interviews and i know it\u0027s true i know this is the case for so many people it\u0027s still every time i hear it my head kind of explodes you know yeah you\u0027re so sick it was like you need to lead a more authentic life yeah\n\nSPEAKER_00: it definitely wouldn\u0027t have made sense when i first started to get sick but looking back i can be in a way i can be grateful for how much i learned through that journey of you know getting sick and figuring out how to be well again yeah how much so much learning so you\u0027ve\n\nSPEAKER_01: talked about before or we talked about before this call preparing for this but you know the spiritual elements of your healing journey so can you talk a little bit about that\n\nSPEAKER_00: yeah i don\u0027t know if you\u0027ve had an old channel who shared anything like this i have had the odd client that\u0027s come to me with this but i also had a kundalini or spiritual some kind of spiritual awakening during my healing journey which is i think why the ups and downs were so intense i think i also there was also kind of trauma element of it like dissociation like coming out of my body definitely was part of the condition for me and part of what i had to work with afterwards was to learn really how to be in my body and i think spiritually i found something like meditation where i could have these really beautiful experiences sometimes i felt like i left my body and i was like connecting with the whole universe and you know it felt really amazing but then i but then i was really struggling to function in my life and my health was still all over the place you know sometimes i\u0027d feel well and other times i crash again things like that so the spiritual element was an important element of my journey and yeah it\u0027s hard to describe it but i have also witnessed some other people who have also had that experience so it\u0027s kind of yeah happy to talk a little bit about that element of my journey yeah and i got deeply into meditation you know was reading so many books about buddhism and meditation and sometimes i was meditating at times when i was sick three hours a day and i actually got to the point where i had to stop meditating for a while because i was kind of using it in the wrong way i was using it to sort of escape everyday reality and have these mystical experiences but then actually finding it harder to function in everyday reality so i had to sort of yeah learn to do normal things for a while and connect with nature and you know be able to have a normal conversation i think after like a five year healing journey and then all the spiritual experience as well it was it was like yeah i just found normal life a challenge to integrate back into that makes sense that\u0027s a really\n\nSPEAKER_01: good point yeah because then once you\u0027re well and feeling better the rat race the world is waiting for you and\n\nSPEAKER_01: people that haven\u0027t been through what you\u0027ve been through especially at such a young age i imagine just emotionally matured much more rapidly than most of us do at that time period in our lives probably challenging to you know connect or just see where this how this all fits together yeah sounds like this\n\nSPEAKER_01: changed you a lot clearly this whole experience has changed you a lot what has life been like since you\u0027ve been well\n\nSPEAKER_00: yeah i mean life has been good overall i mean overall i feel like i\u0027ve learned how to have experience a lot of joy a lot of inner peace you know i have a great community yeah i\u0027ve had a child i\u0027ve got a son who\u0027s ten yeah and life\u0027s been rich and great and i\u0027ve you know done lots of different kinds of therapeutic and coaching trainings and been working in this field myself nearly twenty years so yeah there\u0027s been lots of great things i\u0027ve run half marathons i think i did what partly want to prove like to the world of myself i am fully well you know yeah so yeah life\u0027s been life\u0027s been good and i feel like i\u0027ve definitely learned so much through that time that shifted things for a deep level for me and also kept me interested in personal growth you know because i was like well how you know doing some emotional work and spiritual work and heal chronic fatigue and where else can i go with this you know how much joy can i create in this lifetime how much ease can i create and yeah so i do keep up quite a few of the practices that support me to heal and new practices you know always learning new things and do feel like i\u0027m a lifelong learner as well i\u0027m always fascinated by learning new things\n\nSPEAKER_01: yeah i was listening to you talk like how do i have more you in my life\n\nSPEAKER_01: this is i\u0027m so inspired by how this has changed you and just the spiritual development and yeah that continuous growth i\u0027m curious because a lot of us think of recovery from these conditions like there\u0027s a finish line where that chapter ends and then the rest of your life starts yeah but in reality a lot of people find it\u0027s more of an ongoing journey so what\u0027s that been like for you is there self care things you need to still do you know is there any part of you that\u0027s worried about you know becoming unwell again what\u0027s life kind of post recovery been for you\n\nSPEAKER_00: i mean it has been a really long time now so yeah it\u0027s been maybe seventeen years since i\u0027d say the five years was up but in those years you know especially in the lesser in recent years but definitely sort of my later twenties early thirties i did have periodically sort of what i would now describe even back then i didn\u0027t always understand it would be like trauma type symptoms would come up like i\u0027d feel a bit shut down or a bit dissociated and i wouldn\u0027t know why and then i\u0027d have to go and do some work on myself with a practitioner or perhaps i\u0027d go and spend some nighttime in nature and that would regulate me but i did have to quite yeah quite regularly kind of figure out how to regulate myself again when things were out of balance and that can still happen today but not to the extent it was still happening in my sort of late twenties early thirties and not as often so yeah but that was when i yeah i guess sort of started to see that it wasn\u0027t all about being chronically sick and definitely wasn\u0027t about being chronic sick anymore like i don\u0027t worry about that and i didn\u0027t worry about that i mean maybe a little bit in the early stages because i was a bit kind of like oh i\u0027ve been ill for all these years now i need to make up for it i need to go and help at these retreats that i used to go and just receive i need to go and do all these things and i need to get this message of healing out into the world and you know and there was a bit of a kind of pushy energy and all of that sometimes but overall no i never worry about getting chronically sick again with chronic fatigue yeah\n\nSPEAKER_01: yeah amazing clearly this also shifted or influenced your career trajectory so you tell us a bit about that\n\nSPEAKER_00: well yeah yeah so i mean i trained my first training was with alex howard and the optimal health clinic and their therapeutic coaching training and actually even before that i train in some body work and doing the bowen technique so i actually started out i was a body work practitioner and then in time i ended up connecting to ashok gupta and i made the louis training program and ended up being a coach for the gut program which i have been for since two thousand and eight so really long time and yeah so that\u0027s kind of been a lot of my work actually has been a coach the gupta program more recent years i\u0027ve trained in internal family systems ifs work which is about working with inner parts so i also work with people with ifs as well not necessarily through the gut program but just people with that model as well therapeutic model yeah\n\nSPEAKER_01: wow what a wealth of information and knowledge and insight you are from all of this it\u0027s just incredible you know over the years the many years that you\u0027ve now been doing this and working with people has your understanding of these conditions or recovery changed do you see a lot of variety in people\u0027s path to recovery and what are some of the biggest takeaways from the work that you\u0027ve done\n\nSPEAKER_00: yeah lots of different things but the power of recognizing the mind body connection and starting to understand that and do the work around that one piece that\u0027s perhaps a bit unique about what i bring is that looking back i feel a lot of my trauma wasn\u0027t necessarily personal but was ancestral was kind of more that i sort of took on from my family line so that that\u0027s a piece sometimes i see in clients that perhaps isn\u0027t spoken about so much that sometimes and particularly people are like oh not much happened to me but then you find out their mother\u0027s ill and their grandmother was ill or something like that what\u0027s going on in that family line that\u0027s created this pattern of illness for example\n\nSPEAKER_00: so yeah i also trained in family consolations work and that you know that\u0027s all about kind of how it affected by our wider family system and how an illness in one person might not be the root of that problem might actually be a more systemic or kind of wider family system issue so yeah that\u0027s an interesting\n\nSPEAKER_01: perspective it\u0027s fascinating i remember recently in animals and they can trace back if they have let\u0027s say a dog mother that has trauma they will see health problems in her children up to three generations after that from that and this is you know a study with dogs so i can even imagine how this all i\u0027m sure i\u0027m oversimplifying what you\u0027re saying here but just yeah of our families\n\nSPEAKER_01: so many things that we don\u0027t understand fully about what impacts our health and our world it\u0027s really fascinating yeah francis so grateful to you for being here today thank you so much for people watching everything you need to know to connect with her will be in the video description of course please expand that and check that out yeah i just adore you so glad you\u0027ve met so appreciate taking the time to share this today the world is so much better for having you in it you just radiate goodness and insight and light and yeah so so glad that we connected so thank you for doing this today me too thanks for amazing work yeah and for those of you watching if you haven\u0027t already signed up for my newsletter i know there\u0027s a lot of recovery interviews and it\u0027s a lot to keep up with so every week i send out an email with just the bullet points like for people what worked what didn\u0027t work the key resources that got them there so if you\u0027re worried about missing out on anything you can sign up for that there and i also just want to send a quick shout out to our channel member mark laine thank you mark for joining the channel i really appreciate the support big hugs to you on your journey if you\u0027re not people watching if you\u0027re not already a channel member you can click the join button below to learn more and get access to perks that no one else gets yeah that\u0027s it for today thank you again francis thank you to all of you watching big hugs to you whatever you\u0027re going through keep at it we have totally got this i hope you enjoyed this video as much as i did this interview i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": " get fully well but it was a very up and down journey as well yeah\n\nSPEAKER_01: so i imagine you tried some things over those years that didn\u0027t work what were some of those things\n\nSPEAKER_00: well for example quite early on i remember going to an acupuncturist who had written an article that said me and my me chronic fatigue recovery cure and i was like oh this is going to be the thing that\u0027s going to cure me so i had some acupuncture and she gave me some herbs as well which just tasted so bad and no it\u0027s not like against acupuncture because i love it and over the years it has been good since then and it did help it did help on some ways on my journey but that particular acupuncture or series of sessions didn\u0027"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
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"source_doc_content": "SPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i\u0027ve learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today\u0027s interview is an example of just that hi everyone i\u0027m ralan if you\u0027re new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i\u0027m super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let\u0027s dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn\u0027t have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i\u0027ve had jason on the channel before that\u0027s jason mctiernan\u0027s program correct i can thrive yeah i\u0027ve interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he\u0027s a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you\u0027re going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i\u0027m by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we\u0027re in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you\u0027re even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i\u0027m training for a full marathon with some of my friends and before i don\u0027t think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it\u0027s a horrible thing to go through but thankfully there\u0027s a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn\u0027t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that\u0027s more of a journey rather than oh i\u0027m stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it\u0027s meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you\u0027re going through the program if someone\u0027s watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you\u0027ll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there\u0027s online videos that he\u0027ll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great and it\u0027s just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he\u0027d give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program\u0027s working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there\u0027s still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that\u0027s a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we\u0027re going to keep going to keep having symptoms and different things in our lives to let us know what\u0027s going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i\u0027ve got the tools i know what to do i can get past it yeah so for you have anything that you\u0027d want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you\u0027d say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you\u0027re feeling even if you haven\u0027t found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they\u0027re facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he\u0027ll always tell you that you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been like you\u0027re on the right path to recovery\n\nSPEAKER_00: amazing well i\u0027m so so happy for you kelly this is incredible i\u0027m happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it\u0027s always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don\u0027t want people watching to feel discouraged if their recovery doesn\u0027t happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you\u0027re interested in learning more about jason mctiernan and his program i can thrive we\u0027ll put a video here to help you get a better sense of what that\u0027s all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n",
"span_text": "these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i\u0027ve learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today\u0027s interview is an example of just that hi everyone i\u0027m ralan if you\u0027re new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i\u0027m super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let\u0027s dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn\u0027t have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i\u0027ve had jason on the channel before that\u0027s jason mctiernan\u0027s program correct i can thrive yeah i\u0027ve interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he\u0027s a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you\u0027re going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i\u0027m by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we\u0027re in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you\u0027re even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i\u0027m training for a full marathon with some of my friends and before i don\u0027t think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it\u0027s a horrible thing to go through but thankfully there\u0027s a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn\u0027t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that\u0027s more of a journey rather than oh i\u0027m stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it\u0027s meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you\u0027re going through the program if someone\u0027s watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you\u0027ll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there\u0027s online videos that he\u0027ll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great and it\u0027s just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he\u0027d give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program\u0027s working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there\u0027s still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that\u0027s a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we\u0027re going to keep going to keep having symptoms and different things in our lives to let us know what\u0027s going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i\u0027ve got the tools i know what to do i can get past it yeah so for you have anything that you\u0027d want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you\u0027d say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you\u0027re feeling even if you haven\u0027t found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they\u0027re facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he\u0027ll always tell you that you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been like you\u0027re on the right path to recovery\n\nSPEAKER_00: amazing well i\u0027m so so happy for you kelly this is incredible i\u0027m happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it\u0027s always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don\u0027t want people watching to feel discouraged if their recovery doesn\u0027t happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you\u0027re interested in learning more about jason mctiernan and his program i can thrive we\u0027ll put a video here to help you get a better sense of what that\u0027s all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n",
"span_text": "pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00"
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"source_doc_content": "SPEAKER_00: hello everyone i am really excited today we have katie gardner joining us she is in buffalo new york katie is an licensed occupational therapist and she is here today because she is going to be sharing some of her journey with chronic illness which includes diagnosis for chronic fatigue syndrome as well as some other things i\u0027ll let her go into details of that but i\u0027m just really excited to have you here welcome katie thank you for having me i\u0027m so excited to meet with you and to be here i am really excited to hear more about your story and i\u0027m so grateful and beyond impressed that you are willing and able to do this right now because i hope you don\u0027t mind my sharing but katie is thirty eight weeks pregnant as we speak\n\nSPEAKER_00: hopefully not during this interview but that would add some excitement\n\nSPEAKER_00: well you\u0027re a trooper thanks for doing us i hope your week goes well you induced on your wednesday getting induced on wednesday so very exciting your world is about to get even crazier\n\nSPEAKER_00: i\u0027m excited that\u0027s the thing like life opened up and once we got better you know everyone must be feeling this like i got a second chance at life\n\nSPEAKER_00: everything i just like i don\u0027t even know because i couldn\u0027t even picture my future before i think it was too hard to dream or hope and now it\u0027s like who knows what will happen it\u0027s just amazing if i\u0027m having even the slightest bad day i catch these moments and i have to catch myself and be like you are a walking miracle like this is incredible you are living something that you dreamed about every day for years like your life is a dream whatever it is that\u0027s stressing you out does not matter it does not matter yeah absolutely and it\u0027s it\u0027s funny that\u0027s one of my prayers is may i never forget may i never forget and become\n\nSPEAKER_00: no offense but like a normal person\n\nSPEAKER_00: who takes it for granted i never forget because that joy is so enlivening and it\u0027s like every day it\u0027s like you\u0027re winning the race every day you\u0027re like yes\n\nSPEAKER_00: it\u0027s like being like when you watch a six year old wandering through the world and they\u0027re just like a flower a tree a puppy\n\nSPEAKER_00: these new eyes where you just get to almost be childlike again and just really appreciate things so much so yeah i hope it doesn\u0027t go away yeah i don\u0027t think i don\u0027t think it will but it\u0027s something i do think about often\n\nSPEAKER_00: i think i\u0027ll appreciate this it is hard though to have friends who\u0027ve never been through it like most of my friends have obviously never been through it and they complain about their lives and i just feel such a detachment sometimes it is hard\n\nSPEAKER_00: as much as it probably was hard for them to be my friend through it sometimes it\u0027s hard for me to be their friend now because i\u0027m like you have it all\n\nSPEAKER_00: i really struggle with people who probably we all have our triggers but people who seem physically able to go to the gym but just choose not to\n\nSPEAKER_00: it was the worst for me when i was sick like i would give anything to because i love working out so that\u0027s one of my things that i really miss so when i can see people who could and just did it of course i don\u0027t know their life and i don\u0027t know what they\u0027re facing and they\u0027ve got their own reasons and limitations i have no clue what\u0027s going on in their world but yes i know i know exactly what you mean i felt that way about people who complain about work and i\u0027m like that\u0027s all i want to be able to do like i was my life and my identity but yeah you\u0027re right you know people are entitled to complain about their lives yeah their problems are real\n\nSPEAKER_00: it does change things so it is nice to just connect with other people who kind of had this experience just before we dive in as i always say i\u0027m not a medical professional katie is an occupational therapist so she is a medical professional but neither one of us are for sure your medical professionals at the moment so we\u0027re just sharing our own personal experience of living with and recovering from chronic illness so certainly nothing of what we share should be considered medical advice my story actually begins in childhood actually because i did have some major infection that impacted my ability to go to school and i was in the hospital no one knew really was wrong and the reason bring that up it\u0027s because it\u0027s relevant to later it was constant fungal infections in my stomach intestines and the doctor find it a lot of times couldn\u0027t treat it it\u0027s believed that some of that stuff may have triggered my genetic condition i did recover from that so i knew healing was possible and it wasn\u0027t until twenty fourteen that i actually started experience chronic fatigue symptoms where i couldn\u0027t walk i just wasn\u0027t recovering sleep so i would be working for about every i don\u0027t know two to four months and then i would end up collapsing and i just couldn\u0027t recover fully so anytime i did a strenuous task i would have that sort of\n\nSPEAKER_00: price to pay so to speak so that\u0027s when i knew something was more serious and started to investigate it and try to heal so what happened when you initially went to the doctors what did they say i was initially diagnosed with fibromyalgia they completely ignored the ability that i was having a hard time moving against gravity and fatigued they really missed the fatigue so it took a while before i even got the chronic fatigue diagnosis but no one would even really treat it i don\u0027t think they really what to do they looked at just blood work ology it just really i wasn\u0027t really getting care for it for many years yeah unfortunately such a common story i\u0027m sure you\u0027ve seen as well it seems to be the same for so many of us in the beginning not a lot of answers not a lot of help so what did you do well i kept rehabilitate myself being an occupational therapist and leaving that possible because childhood experience i just\n\nSPEAKER_00: researching doctors researching as much as i could and then eventually i moved from new york city back home to buffalo and that\u0027s where i got linked with some really great doctors first an integrated nurse practitioner\n\nSPEAKER_00: level of investigative blood work that i was not used to i call her the blood detective she was looking at underlying infections candida epstein barr virus real infections and she went out helped me to go after that and for a while that actually made me worse it was pretty brutal treatment she would try to build my body up but at the same time it was getting down these infections i could for some reason never my body just couldn\u0027t fight and that was the missing link why couldn\u0027t my body fight these infections other people have epstein barr virus and they recover what was it about my body that was the missing link that\u0027s what brought me to my other doctor who\u0027s an immunologist and probably the most brilliant man i know and he started looking at genetic conditions that have to do with metabolic myopathies and mitochondrial dysfunction and what direction did he suggest going for that or what where did you take it from there so i had full genetic or full genome testing done and i did find that i have mitochondrial disease called mitochondrial dna depletion syndrome eleven and when i read about it it was like tears down my face because it\u0027s like targets the diaphragm i was like this is it finally and he put me on the cocktail which helped basically my body wasn\u0027t producing mitochondria i could never fight infections my body strength to fight so by him supplementing and boosting my mitochondria i could now fight the infections that i was trying for probably like a year and a half prior and when you came together it was like\n\nSPEAKER_00: wow before you got this what were your days like or what were your weeks like oh my goodness i was working on a master\u0027s degree which you know is a lot it\u0027s a lot of work there full days i was doing clinical rotations i had friends i went out almost every night of the week i don\u0027t even know how i didn\u0027t look good in school i love to socialize i love to go out i traveled i lived in colorado i lived in philadelphia new york city i\u0027m sure everyone was shocked when i got just not something that anyone probably could have predicted or coming wasn\u0027t at all like my childhood experience it\u0027s completely different yeah it sounds like it came on pretty suddenly it seems like that but when i look back i think that there were some signs that i was stressed i had been in graduate school i\u0027d been in a stressful relationship a toxic relationship i was just probably overworking myself i was living in new york city working very long hours i was a traveling therapist at one point so i was walking i was working ten hour days walking from one end of manhattan to the other end of manhattan i\u0027m warning signs i wasn\u0027t necessarily the healthiest person\n\nSPEAKER_00: so many things it just really seems like so many of us have so much of the same you know it seems like it comes on suddenly but when we look back we see we have pretty much i mean i\u0027m sure it\u0027s not everybody but i imagine you\u0027ve noticed the same really pushing it not taking such good care of ourselves but on the surface we look so vibrant so healthy we\u0027re always on the go we might be working out a lot you know just very social happy looking people so you went from obviously being very active you know very engaged in life when you got sick what did that look like what did your days and your weeks look like after that for those for that first year however long before you started getting the help that you needed the first year was kind of basically me living in denial i would continue to try to work and people would pull me aside like this is dangerous\n\nSPEAKER_00: because i was also working with patients i was i was scared i rob people i was scared i hurt people i felt an ethical responsibility it just wasn\u0027t safe i didn\u0027t feel safe riding the subway home because i thought i\u0027d fall asleep or pass out and wake up and not know but it was very difficult to do grocery shopping so i just kept trying and then\n\nSPEAKER_00: it took me a while to realize that this was serious and that it needed a full time job so eventually you had to quit your job and focus on getting your health back what are some other things that have contributed to your recovery i would say lifestyle modification i had to dramatically change my diet through i had to do basically an elimination diet first to figure out what was causing basically use food as medicine as a mindset of healing and then i also had to really work on rehab through movement and for me that\u0027s really important because i can\u0027t get my cells oxygen if i\u0027m not so i know movement is a very hot topic and it is very controversial because it\u0027s not done properly but i had to\n\nSPEAKER_00: gradually increase my ability to\n\nSPEAKER_00: and then also i removed all toxic ingredients immunotoxic i\n\nSPEAKER_00: water filtration system on my house i just the lengths which i went to and it really helped my so you mentioned diet played a big role and it seems that a lot of us find this and i\u0027m curious what diet changes ended up helping for you not because i think necessarily it\u0027s the key for anyone else but i think it\u0027s good for people to see that there are different paths to health through diet for people and it is very much individual so i\u0027m curious for you what ended up being your what did your body respond to well the three main offenders that were pretty obvious before i even did the elimination diet were dairy gluten and sugar and then from there i tried many different diets i did find for me i needed a high protein meat based diet i don\u0027t know if that\u0027s\n\nSPEAKER_00: mitochondrial disease but when i tried vegetarian i had a hard time with beans i had a hard time with soy and so i struggled with some of those components of it so i found that some nightshades bother me i don\u0027t know if i\u0027m familiar with nightshades but i did have a problem with those for a while nightshades that\u0027s things like what is that is that tomatoes and bell peppers or what is yes it\u0027s tomato potatoes eggplant the one i can\u0027t take i can\u0027t tolerate anymore i can\u0027t see the funny thing when i did the elimination diet and i gave my body a break to heal i slowly could incorporate those things back in without being as inflamed over time so it\u0027s kind of scary at first you\u0027re like what am i going to have left but eggs were bothering me for a while they don\u0027t bother me\n\nSPEAKER_00: just took some things out for a while gave my body that chance to heal and slowly would incorporate them and sometimes they did offend me still and sometimes they did well that\u0027s encouraging that you didn\u0027t have to cut everything out forever because that is a bit of a scary prognosis to look at for your life like how eating is just going to be stressful forever it was stressful and it\u0027s very hard to do i did it as a last resort after years of suffering it wasn\u0027t my first\n\nSPEAKER_00: trying to do that it is very hard\n\nSPEAKER_00: from my husband and my mom and help because i was honestly too sick to cook for myself and with those types of restrictions it\u0027s just hard to meal plan hard to it\u0027s a hard process and for me it also required i think i hear you saying the same thing but just a level of desperation because it is hard but you get to a point where you\u0027re so desperate you just need you\u0027ll do just about anything to get your health back so all of a sudden what felt unthinkable is suddenly doable and another thing that helped me because for a while i tried really hard to get my diet in order but i would cheat and fall off and then come back to it before i really got serious as time rolled on and i could see that i wasn\u0027t getting my life back i was going to have to get more serious but another thing sugar we all mentioned seem to mention sugar and sugar was a massive one for me and sugar was a tough one for me not just because i liked it and i didn\u0027t want to get rid of it because i clearly had a physical addiction it was intense i would get up in the middle of the night every single night and eat sugar like there was something happening i would sometimes take a spoon\n\nSPEAKER_01: and eat it right out of the\n\nSPEAKER_00: canister like it was insane so for me it was healing my gut getting more probiotics and i always thought it was a willpower thing i was just weak and i just why can\u0027t i stop i know this is bad for me but once my body started healing the cravings went away i think the desperation combined with the body starting to heal and get a bit more imbalance so those cravings go away and it all becomes a bit more doable it does become a bit more doable it\u0027s really hard at first and i had i have memories of being a little kid and like going in the corner and like eating treats like nonstop and bread i was obsessed with\n\nSPEAKER_00: eating that infection and there was some sort of addiction there and i mean it\u0027s very it\u0027s very hard to fight fight that but once i got broke through you\u0027re right i didn\u0027t feel those cravings the same way and doesn\u0027t it just feel like freedom i thought i was going to have to face this the rest of my life i thought my whole life was going to be a battle with food because it really was before i got sick and it\u0027s just incredible to have this healthy relationship with food where it\u0027s not a battle and you\u0027re not trying to force yourself to eat the right things okay so i just want to make sure i\u0027m catching all of this so for you the main things\n\nSPEAKER_00: could you summarize for us what were the main things that worked for you for your recovery the main things that worked there\u0027s something\n\nSPEAKER_00: i did have to go back and heal trauma i had to do some spiritual healing so some mind body work i had to modify my diet i had to create some sort of movement routine that worked for my body that i could tolerate and not decline with and i had to remove all environmental toxins yeah it sounds very similar to my journey as well and i think it\u0027s good using the word movement and this was one of the mistakes i think when i talk about my recovery journey as i call it exercise and when people hear exercise they picture at the gym or going for a run but when i\u0027m talking about my exercise program it was so small you know it was one to two minutes a day and in the beginning not even every single day and it was just really gentle movement because i think you\u0027re right it is definitely a sensitive topic and with good reason because full blown exercise can put people in the hospital even just three or four minutes of it and wrapping your head around i gotta get this lymph moving to reduce i have to put i have to and i have to get oxygen and nutrients to my cells and that happens through movement\n\nSPEAKER_00: yeah it\u0027s confusing because we\u0027re trying to get in sync with our body and listen to our body which is part of this journey but a big part of the message is our body is telling us some of the time it\u0027s just don\u0027t move but i found i couldn\u0027t rest my way out of this i couldn\u0027t just lay in bed or lay on the couch all day i was never going to get better i tried that for a long time and it didn\u0027t get me anywhere i agree i did the same thing so it\u0027s great there are so many things that did work for you were there some things that you tried that didn\u0027t work for you and what were they\n\nSPEAKER_00: that doesn\u0027t work chasing symptoms\n\nSPEAKER_00: i was in pain for a long time whether it was taking this pill taking this supplement everyone always wants to know what supplements i\u0027m on and i\u0027m going to real honest the supplements i take are based on my blood work and my genetic profile they\u0027re not necessarily applicable to else it doesn\u0027t\n\nSPEAKER_00: and i don\u0027t think supplements are the cure clearly the supplements i take are supporting metabolic disease i have where my body\n\nSPEAKER_00: so idea that there\u0027s going to be a quick\n\nSPEAKER_00: pill just chasing symptoms i mean you do need symptoms and it\u0027s one of the best things i ever did\n\nSPEAKER_00: one of the best things you did was go off coffee\n\nSPEAKER_00: hormonally helped rebalance my hormones healed my gut and also i have such good energy throughout the day it just it was it was shooting up my cortisol too much and rocking my just my adrenals so it made it made a big impact but for a while i was like quick fix like this\n\nSPEAKER_00: it seems like almost cruel advice for someone with chronic fatigue syndrome to say to stop having coffee what do you mean it\u0027s just the only thing that makes me feel better but it makes me feel better at least for me in the moment but it put me on such a roller coaster it messed up my blood sugar in time came to realize that big part of my afternoon crashes was just the caffeine crash and it\u0027s not a regular person caffeine crash with cfs it seems to be amplified it\u0027s just\n\nSPEAKER_00: yeah and it\u0027s a good point about the symptoms too i think we\u0027re all kind of brought up to chase symptoms you know we treat things one at a time we look at our body like a car you know fix little parts individually and i agree i think it\u0027s a balance you do have to treat some of them you know like for me i wasn\u0027t sleeping and i did all the things under the sun that you\u0027re supposed to do and it just wasn\u0027t working so for a while i had to take some you know prescription sedatives and like you had i had to target some symptoms individually but in the end what seems to pull its weight is looking at things in a more holistic viewpoint i agree and i had insomnia too and i had to take medication and i\u0027m not against that but i\u0027m talking about yeah overall healing yeah yeah when people ask things like you know what supplement should i take for brain fog or what should i do for you know whatever pain in my body and it\u0027s it\u0027s really hard i can\u0027t break any of it most of it down there wasn\u0027t specific things i did that worked for specific symptoms it was just slowly pulling my body out of all of it so i actually get some people messaging me or commenting on videos that are wanting to get pregnant or thinking about having a child and that actually naturally brings up a lot of stuff for them i don\u0027t have any children so i don\u0027t have anything to offer on this but i\u0027m curious for you what has this process been like this pregnancy with your history of illness\n\nSPEAKER_00: well if you told me two years ago that i\u0027d be pregnant i would have thought that that\u0027s crazy\n\nSPEAKER_00: like i was literally almost on my deathbed two years ago i could never have imagined this future i could have never imagined well enough because i didn\u0027t want to be a burden more of a burden to my husband i didn\u0027t want the financial responsibility i didn\u0027t think i could be a good mom i didn\u0027t want to\n\nSPEAKER_00: with that watch that so it was not even thought about and then when i got better so quickly heal and heal from endometriosis all these other things i was like well i kind of i have a good relationship with god right i was like well what\u0027s next what do you want from me and i did feel i gave my life over so i realized that was the one area i was holding back because i was still i didn\u0027t want to live in fear\n\nSPEAKER_00: because there\u0027s not a lot of research out there doctors couldn\u0027t make any promises to me\n\nSPEAKER_00: you\u0027ll be fine and i\u0027m like\n\nSPEAKER_00: pregnant and so that set me on a course of learning how to give up control in a whole nother way and\n\nSPEAKER_00: it has been quite a journey i mean i keep reminding myself these are normal symptoms it does triggering it\u0027s triggering sometimes to be like is this normal fatigue or is this going back and you know are these headaches are they going to turn into migraines again you know but i keep reminding myself no it\u0027s normal to have headaches when you\u0027re pregnant it\u0027s normal to feel tired\n\nSPEAKER_00: you know and so i think in a way this experience is healing in itself because it\u0027s reminding me that i\n\nSPEAKER_00: do that our bodies are more amazing than we think that they are\n\nSPEAKER_00: and so it\u0027s been definitely an interesting experience yeah i can only imagine it\u0027s something that i experience even not being pregnant i imagine it\u0027s something we all experience to a certain extent we\u0027re just a bit i don\u0027t want to say paranoid but we\u0027ve been through a lot so it\u0027s natural to question all these things and to get scared and have anxiety and is it coming back is this normal i thought i was better and it\u0027s a constant reminder i have to have for myself that getting better doesn\u0027t mean perfection nobody is nobody is perfect\n\nSPEAKER_00: yeah i mean normal healthy people get headaches healthy people have bad days and so i try to draw that line somewhere but you know i did get gestational diabetes with this pregnancy and i remind myself two of my husband\u0027s coworkers have gestate had gestation like but it\u0027s so hard when we are so used to our own trauma from this experience to not think oh no like something and probably go easy on ourselves for having those thoughts it\u0027s it\u0027s natural i think anyone\u0027s going to and i would hope and i would imagine that as time passes we\u0027ll get more and more comfortable with this and more used to just the regular ups and downs of life this has clearly been a massive ordeal that you\u0027ve been through i always love knowing you know how this has changed you how it\u0027s impacted your life oh yeah i mean total different direction i thought i was going to have this full time career\n\nSPEAKER_00: occupational therapy and how i saw my identity how i valued myself was on my achievements and that was taken away and i had to realize that my value was deeper than that and people love me people want to help me i could learn to accept that\n\nSPEAKER_00: and i humbled me changed me i maybe was prideful before i wouldn\u0027t say i had a spirituality before relationship with god and it took me getting so sick and so desperate and exhausting all my options\n\nSPEAKER_00: willing to pray like the simplest thing which is free you\u0027re spending thousands and thousands on all these treatments and all these things and that changed me i never be the person i was before and i\u0027m thankful for that appreciate life more i don\u0027t know quite how to put this but it\u0027s a bit of a conflicted relationship isn\u0027t it with illness because i think it really does bring a lot of good and it really changes us and it really catapults our growth and puts us in a better direction a lot of us anyways so you know it\u0027s something that is so horrible and so horrendous and you wouldn\u0027t wish on anybody but at the same time it\u0027s hard to imagine your life what it would be like if it hadn\u0027t gone that way it is really hard to describe what suffering does i mean this sometimes feels like i was in prison physically and then i\u0027m set free trying to teach i only get one i only get one life\n\nSPEAKER_00: what is this life experience trying to teach me while i\u0027m here how can i get the most out\n\nSPEAKER_00: yeah i think it is a perspective and an attitude too i mean you can choose to take things away from it or not it\u0027s happening either way there\u0027s no taking it away there\u0027s no choosing a life without it so we can either use it to shape us into someone better than we were before or not it sounds like you\u0027ve definitely definitely gotten a lot out of this so good for you for doing all of this work and coming out of this in such a good place thank you it\u0027s exciting to see that in other people i love that i love hearing other people\n\nSPEAKER_00: it really is and there really are so many people that are getting past these things and i just i don\u0027t think we see enough of it it can be so discouraging to look online and see the prognosis for some of these illnesses but there are so many people who are getting better at various stages of recovery there\u0027s so much reason to be hopeful and i love that there\u0027s more and more stories like yours coming out and thank you so much for sharing yours because it just it makes a world of difference you know i remember when i first got sick i was trying to find recovery stories and i just couldn\u0027t find any this was twelve years ago or something i didn\u0027t hear of anyone getting better until i had gotten better\n\nSPEAKER_00: and then people other people start reaching out to me it\u0027s crazy we\u0027re just so shocked like hey so nice to meet you you recovered as well this is incredible\n\nSPEAKER_00: yeah it\u0027s just really nice it\u0027s really nice to see so if you could go back in time to when this first all happened i\u0027m curious what you would tell yourself what would you have wanted to know at the beginning that you think could have helped you navigate this or at least been better prepared for what was to come i guess what we just said i think\n\nSPEAKER_00: that there are other people out there that have gotten better if i own that in the beginning i don\u0027t know my motivation i mean i was pretty motivated but man just knowing that would have just i was so defeated from day one when a doctor told me your life is over when i was first diagnosed fibromyalgia and they said this is it your life is over this is forever and i didn\u0027t want to believe that part of me rejected it but you can\u0027t unhear it so it messed with my mind and if i know no that\u0027s not true you can\u0027t limit a person\u0027s potential you don\u0027t know everything about chronic fatigue syndrome or fibromyalgia so how can you possibly have answers and for me now my faith it\u0027s like you cannot limit a limitless guy so i guess i would just tell myself to trust that process because i think i did have to go through all those years of research and learning i couldn\u0027t just skip ahead\n\nSPEAKER_00: to know what i know now i mean that took years that took years it was like going to getting a bachelor\u0027s degree and chronic illness so i don\u0027t know if there\u0027s\n\nSPEAKER_00: quick way through that of learning your body and learning what works specifically for you\n\nSPEAKER_00: but i guess i would just tell myself that it is very very possible\n\nSPEAKER_00: so perfectly put i\u0027ve never heard that before like getting a bachelor\u0027s degree in chronic illness that is pretty much what all of us have to do i worked way harder at this recovery than any of my actual degrees you know you had to learn so much i think that is the most important point about the hope and not just hope but knowledge that people do get past it because that\u0027s it\u0027s the really the biggest part of the fuel because this is such a marathon it really is it\u0027s really hard it\u0027s exhausting it\u0027s a lot of work it\u0027s boring it\u0027s lonely it\u0027s stressful it\u0027s depressing and if you don\u0027t even know that it\u0027s actually possible i think most of us hold on to this deep hope within us like i will get past this i am determined but when you don\u0027t even know if it\u0027s possible most really bad days or weeks or months it\u0027s really hard to keep picking yourself back up important\n\nSPEAKER_00: to know watching people do get better we don\u0027t know you know what everyone\u0027s prognosis is and we don\u0027t know what everyone\u0027s journey is going to be so you obviously can\u0027t say for certain what\u0027s going to happen for everybody but i think exactly as you said we cannot put limits on it no one can put limits on your recovery thank you so much katie for sharing your story today it really is incredibly moving you know i\u0027ve had goosebumps you brought me to tears it\u0027s just really wonderful how far you\u0027ve come and it\u0027s so amazing to see you living this amazing life and happy and thriving and about to have your baby very soon so just thank you so much for sharing this with us today for asking me to do it it\u0027s my pleasure i love it i love what you\u0027re doing i\u0027m so happy i got to meet liz and i\u0027ve gotten to meet oh my goodness so many people it\u0027s i literally when i think about like us being in a room i probably would just cry\n\nSPEAKER_00: and like i would just high five people and hug people and cry and we survived we did it how amazing would that be i just it\u0027s just so i think about somebody i can picture somebody and they\u0027re bad just\n\nSPEAKER_00: i mean this would have been mind blowing to me to have i would have been like what and it\u0027s funny i don\u0027t i don\u0027t know if you get these types of messages too but people will be like how do you know you really had chronic fatigue\n\nSPEAKER_00: they can\u0027t wrap their head around someone could feel because they\u0027ve been told so many times\n\nSPEAKER_00: and i\u0027m like that\u0027s why the more pictures we can show them of people so it\u0027s not just me saying it a whole group of people stepping forward that it\u0027s like undeniable evidence yeah i definitely get that too you know that comments or people sort of like oh i\u0027m not sure you ever really had it or you probably clearly you weren\u0027t all that sick or that doesn\u0027t actually work for chronic fatigue syndrome because no one can get better from that or most people aren\u0027t like that most people you know are there\u0027s a lot of positivity out there but you can understand the people who are jaded who are skeptical and they just can\u0027t wrap their head around it no this can\u0027t be you\u0027re not like me we\u0027re not the same that\u0027s not possible i don\u0027t know what\u0027s happening there but that\u0027s not it so i try not to be like defensive i\u0027m like whatever i know my life like i don\u0027t have anything to prove that\u0027s such a good attitude to have and that\u0027s such a good way to look at it because i find it is easy to get defensive because sometimes it can feel like an attack and feel like you have to defend your illness which is not helping anything or anyone if people want to find you if they want to ask you questions or know more about you where can they find you i\u0027m on instagram my handle is healing faithfully one word and i have a site where i share more details about my story and healing aspects it\u0027s called healing faithfully com and i do\n\nSPEAKER_00: called healing faithfully\n\nSPEAKER_00: the best way my email is actually on instagram\n\nSPEAKER_00: great and i\u0027ll have all of this listed in the video description so if anyone wants to take a look and find exactly the details it will all be there all right and for those of you watching as always we\u0027d love to hear your thoughts we\u0027d love to hear from you if you have any questions for katie i\u0027m sure she\u0027d be happy to answer them so yeah so please leave your thoughts leave your comments below we\u0027d really love to hear from you and if you enjoyed this video if you think it\u0027s helpful if you think it had value please share it you can share it on facebook there are share links below the video that you can do it directly or you can just copy the link and share it yourself or you can take a screenshot and share it on instagram let\u0027s get these stories out there let\u0027s keep the hope and inspiration\n\nSPEAKER_00: going and help one another out because there are far far too many people who are still suffering right now that i\u0027m sure could use a little inspiration sent their way so if we\u0027re not already friends on instagram please come find katie come find myself we\u0027d love to hear from you and you can see a little bit more about us and our lives and a little bit of the behind the scenes stuff that\u0027s going on and thank you to all of you who are watching thank you for your support thank you for commenting and liking and subscribing and all of that we really do appreciate it and there are more videos and more interviews coming up with more necfs stories so if you haven\u0027t already subscribed make sure to do so because you\u0027re not going to want to miss those so thank you again to katie thank you to all of you watching and that is it for today take care everyone\n",
"span_text": "to heal so what happened when you initially went to the doctors what did"
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"source_doc_content": "SPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i\u0027ve learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today\u0027s interview is an example of just that hi everyone i\u0027m ralan if you\u0027re new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i\u0027m super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let\u0027s dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn\u0027t have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i\u0027ve had jason on the channel before that\u0027s jason mctiernan\u0027s program correct i can thrive yeah i\u0027ve interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he\u0027s a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you\u0027re going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i\u0027m by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we\u0027re in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you\u0027re even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i\u0027m training for a full marathon with some of my friends and before i don\u0027t think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it\u0027s a horrible thing to go through but thankfully there\u0027s a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn\u0027t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that\u0027s more of a journey rather than oh i\u0027m stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it\u0027s meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you\u0027re going through the program if someone\u0027s watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you\u0027ll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there\u0027s online videos that he\u0027ll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great and it\u0027s just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he\u0027d give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program\u0027s working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there\u0027s still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that\u0027s a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we\u0027re going to keep going to keep having symptoms and different things in our lives to let us know what\u0027s going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i\u0027ve got the tools i know what to do i can get past it yeah so for you have anything that you\u0027d want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you\u0027d say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you\u0027re feeling even if you haven\u0027t found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they\u0027re facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he\u0027ll always tell you that you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been like you\u0027re on the right path to recovery\n\nSPEAKER_00: amazing well i\u0027m so so happy for you kelly this is incredible i\u0027m happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it\u0027s always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don\u0027t want people watching to feel discouraged if their recovery doesn\u0027t happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you\u0027re interested in learning more about jason mctiernan and his program i can thrive we\u0027ll put a video here to help you get a better sense of what that\u0027s all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n",
"span_text": "to learning the program it really made a difference and i could use all these little"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "kind of learn these lessons and i know it\u0027s at some point that\u0027s really"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"quote": "\u0027...saying i am anxious is disempowering ... say i am on my way to getting better\u0027",
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"source_doc_content": "SPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i\u0027ve learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today\u0027s interview is an example of just that hi everyone i\u0027m ralan if you\u0027re new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i\u0027m super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let\u0027s dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn\u0027t have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i\u0027ve had jason on the channel before that\u0027s jason mctiernan\u0027s program correct i can thrive yeah i\u0027ve interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he\u0027s a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you\u0027re going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i\u0027m by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we\u0027re in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you\u0027re even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i\u0027m training for a full marathon with some of my friends and before i don\u0027t think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it\u0027s a horrible thing to go through but thankfully there\u0027s a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn\u0027t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that\u0027s more of a journey rather than oh i\u0027m stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it\u0027s meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you\u0027re going through the program if someone\u0027s watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you\u0027ll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there\u0027s online videos that he\u0027ll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great and it\u0027s just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he\u0027d give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program\u0027s working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there\u0027s still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that\u0027s a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we\u0027re going to keep going to keep having symptoms and different things in our lives to let us know what\u0027s going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i\u0027ve got the tools i know what to do i can get past it yeah so for you have anything that you\u0027d want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you\u0027d say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you\u0027re feeling even if you haven\u0027t found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they\u0027re facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he\u0027ll always tell you that you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been like you\u0027re on the right path to recovery\n\nSPEAKER_00: amazing well i\u0027m so so happy for you kelly this is incredible i\u0027m happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it\u0027s always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don\u0027t want people watching to feel discouraged if their recovery doesn\u0027t happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you\u0027re interested in learning more about jason mctiernan and his program i can thrive we\u0027ll put a video here to help you get a better sense of what that\u0027s all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n",
"span_text": "disempowering but instead you could say i am on my way to getting better and that\u0027s more of a journey"
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"llm_explanation": "Text 1, \"...it\u0027s a journey rather than a stuck state...\", is a phrase that conveys a holistic perspective on illness or recovery. Text 2 contains a detailed discussion about chronic fatigue syndrome (ME/CFS) recovery, emphasizing a holistic and individualized approach rather than focusing solely on symptoms, which aligns with the sentiment of Text 1. However, the exact phrase from Text 1 does not appear verbatim within Text 2.",
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: hey guys having talked to over a hundred and seventy people already about their recovery from me cfs or long covid i\u0027ve learned that while recovery definitely is possible it usually takes a while rapid recoveries are the exception but they are incredibly exciting when they do happen and today\u0027s interview is an example of just that hi everyone i\u0027m ralan if you\u0027re new here welcome on this channel we explore recovery strategies and share real life stories every week to learn as much as we can from each other in fact these interviews are now part of a research study to discover what helps most people regain their health i\u0027m super excited to have kelly with us today over in new york just four months after starting a recovery program she completed a ten k run and is now training for a full marathon so let\u0027s dive in and hear about her incredible journey and how she went from barely making it through the day to now running incredibly long distances kelly so great to have you here today thank you so much for being here and sharing your story yes thank you for having me so take us back you know to the beginning or before the beginning how did you how did this all start for you how did you start to notice that you something was off and you were well\n\nSPEAKER_01: yeah so i typically am a very active person and i usually have a lot of energy to do different activities but there is a phase in my life where i just started to get really tired and i didn\u0027t have the motivation to go out and do as many activities and so i just started to notice things like laying in bed i would get these canker sores and just overall not feeling the best\n\nSPEAKER_00: and did you go to see a doctor what did you think was happening\n\nSPEAKER_01: i did go get my blood work done i thought maybe it was low iron or my electrolytes but my blood work came out pretty good and i thought maybe it was something mentally that was causing this\n\nSPEAKER_00: and what made you think that\n\nSPEAKER_01: just because i went to multiple doctors and they all said the same thing that everything was perfectly fine for my vitals my blood work but still i was getting lightheaded when i was standing up i didn\u0027t have as much focus during the day and the worst symptom was the mouth sores which i thought maybe had to do with me not handling my stress well\n\nSPEAKER_00: okay so it sounds like the doctors essentially sent you away with nothing and you were left to figure this out on your own so what did you do from there\n\nSPEAKER_01: so i heard about this program i can thrive and i was referred to the program by a family member and so i went to therapist before this to try to figure out some skills but none of them were as helpful as this program that i started to use\n\nSPEAKER_00: okay i\u0027ve had jason on the channel before that\u0027s jason mctiernan\u0027s program correct i can thrive yeah i\u0027ve interviewed a lot of people actually on the channel who have gone through his program and have recovered and interviewed him himself he\u0027s a great guy so what was it like going through the program for you and how did you find how do you think that it helped you to get past this and get where you are now\n\nSPEAKER_01: in the beginning i was a little skeptical because the program does have like a hypnosis type of effect in it where you\u0027re going through and imagining yourself at ease in a situation and trying to bring that into the future so i never really had that type of technique but once i really committed to learning the program it really made a difference and i could use all these little techniques in situations when i\u0027m by myself such as like when i was driving in the car i get anxious and you really train your brain to think differently\n\nSPEAKER_00: yeah it is the whole program is based around i know a big component of it is this brain retraining piece which so many people are finding incredibly helpful with their journey had you heard of anything like this before you started doing this\n\nSPEAKER_01: i heard of going to a hypnotist which i never went to but i know some people like that i also heard of the emdr techniques for therapy so i movement desensitization and reprocessing but i never really tried his method\n\nSPEAKER_00: yeah i just i asked because it can be a different way of thinking about healing than we usually do when our doctors tell us from what we grew up hearing about how you get well typically some sort of medication or surgery or something so to work with your brain to heal your body is a completely paradigm shift that we\u0027re in right now understanding healing and symptoms so once you started doing the program how quickly did you start to see progress\n\nSPEAKER_01: i started to see it maybe two weeks after it was pretty quick and compared to some other cases i know jason said that mine was a quicker recovery but yeah it really changed within six months i was back to feeling fully well\n\nSPEAKER_00: wow and since then you\u0027re even running ten k races can you tell us about that and what did that feel like\n\nSPEAKER_01: that was great my first ten k that i ran that year it was just motivating me to get back out there and challenge my body with physical activities right now i\u0027m training for a full marathon with some of my friends and before i don\u0027t think i would have had the mental stamina to do that and now i just have that positive affirmations and changing the way of my mindset from fix to growth and it really has made a difference\n\nSPEAKER_00: yeah going through these things does seem to transform people it\u0027s a horrible thing to go through but thankfully there\u0027s a lot of good that comes out of it do you have you noticed other changes within yourself for how you live your life now versus before you went through this\n\nSPEAKER_01: yeah i definitely think that i am more eager to surround myself with people who have the growth mindset that they want to continue to challenge themselves and get better i also use a lot more of empowering statements where i didn\u0027t realize that saying like i am anxious is disempowering but instead you could say i am on my way to getting better and that\u0027s more of a journey rather than oh i\u0027m stuck at this state of anxiety so definitely having those skills to keep positivity in my mind has helped my progress\n\nSPEAKER_00: yeah it sounds like you took a lot away from the i can thrive program although it\u0027s meant for cfs and long covid and similar conditions recovery but like a lot of programs or like a lot of things that we do you learn a lot of tools that end up serving you in life past this and beyond this yeah so when you\u0027re going through the program if someone\u0027s watching it and they are thinking oh this might be a good fit for me what does it look like to actually do the program can you tell us what an average day or week looks like\n\nSPEAKER_01: sure so in the beginning you\u0027ll start to meet with jason more frequently and he will guide you through the meditating process you also have access to the resources so there\u0027s online videos that he\u0027ll send you i think one of the best parts of this program is how personable jason is so i would get text messages randomly and throughout my recovery saying i just climbed a mountain i know you can do it you\u0027re doing great and it\u0027s just great having someone who believes in you that much even though we were complete strangers and the program focuses on like you said heavy resources so we would do our coaching sessions i would watch the videos he would recommend audio books and he\u0027d give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program\u0027s working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there\u0027s still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that\u0027s a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because these are things that were happening in our brain and our nervous system and you know trying to send us signals and alarms and we want those things to keep working so we\u0027re going to keep going to keep having symptoms and different things in our lives to let us know what\u0027s going on i guess the great thing is is that we walk away feeling not scared of that because if something does pop up like okay i\u0027ve got the tools i know what to do i can get past it yeah so for you have anything that you\u0027d want to say to people who are watching right now who are still on their journey maybe feeling a little bit lost or hopeless or anything that you\u0027d say to yourself if you could go back during those times\n\nSPEAKER_01: i would definitely validate what you\u0027re feeling even if you haven\u0027t found any doctors or any social support that has the same experience there are people out there who have these product fatigue syndromes whatever they\u0027re facing and this program truly could help all you need really is to be pointed to the right resources and you know just like jason he\u0027ll always tell you that you got this and it\u0027s a journey so can\u0027t just keep comparing yourself to where you\u0027ve been like you\u0027re on the right path to recovery\n\nSPEAKER_00: amazing well i\u0027m so so happy for you kelly this is incredible i\u0027m happy you connected with jason and yeah wishing you just amazing things from here i appreciate you taking the time to tell your story i know it will mean a lot to people to hear it it\u0027s always great to see that hope on the other side and that you can turn things around quite quickly sometimes sounds like yours is you know i always say radical success is the exception not the norm so you know don\u0027t want people watching to feel discouraged if their recovery doesn\u0027t happen in two weeks i know overall it took longer than that a few months for you guys yeah it is just really encouraging to see that you can turn things around and sometimes really quite quickly so yeah thank you so much for doing this today i really appreciate it kelly yeah thank you for those of you watching looking forward to your comments as always and i will link up here if you\u0027re interested in learning more about jason mctiernan and his program i can thrive we\u0027ll put a video here to help you get a better sense of what that\u0027s all about so yeah thank you again kelly thank you to those of you watching i hope you enjoyed this video i hope you got something out of it and i hope to see you in this next one here\n\nSPEAKER_01: thanks erin\n",
"span_text": "give you free copies over email and just pointing you to different authors that have similar experiences so you see that the evidence is out there that this program\u0027s working\n\nSPEAKER_00: amazing and are you do you feel fully past this now is this officially behind you\n\nSPEAKER_01: i think there\u0027s still some days where i do feel very tired but i have now these tools to fix that so obviously you know life is stressful i\u0027m still going to have some anxious moments but i can refocus and use these tools to pass it\n\nSPEAKER_00: yeah i think that\u0027s a really good answer because i mean the question itself really you know what does it mean to be fully recovered and fully past this if anyone ever really you know because t"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"llm_explanation": "Text 1 is not contained within Text 2. Text 1 is a short fragment about feeling alone due to struggle, while Text 2 is a detailed transcript discussing chronic fatigue syndrome, symptom management, recovery, and the experience of sharing stories and helping others with the condition.",
"llm_is_contained": false,
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"quote": "\u0027...people don\u2019t see struggle you go through ... makes you feel alone...\u0027",
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
},
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"llm_explanation": "Text 1 expresses a feeling about others doubting the reality of a condition being \u0027in your head.\u0027 Text 2 is a detailed discussion by speakers about chronic fatigue syndrome/ME/CFS, focusing on symptoms, recovery, and the challenges of symptom comparison. Text 1 is a short phrase and sentiment, while Text 2 is a long, comprehensive transcript. There is no exact phrase or sentence from Text 1 explicitly contained within Text 2, but the general idea of feeling misunderstood or doubted is indirectly related to the content of Text 2.",
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"quote": "\u0027...sometimes it feels like people think it\u2019s in your head...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
},
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"quote": "\u0027...keep hoping for a cure to move on with life...\u0027",
"source_doc": "aS8CQtc9DmA.txt",
"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
"span_text": "generated by your body when you\u0027re in fight or flight so you feel anxious your body says"
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
"span_text": "you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero"
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"quote": "\u0027...pain circuits absolutely permanent like phantom limb pain\u0027",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
"span_text": "hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course"
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"llm_explanation": "Text 1 contains the phrase \u0027learn to separate yourself from pain and get on with life.\u0027 In Text 2, Dr. David Hanscom discusses a similar concept about learning to separate yourself from your pain as part of the healing process for chronic pain. Therefore, the idea expressed in Text 1 is indeed contained within the broader context of Text 2, though not necessarily as an exact quoted phrase.",
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"quote": "\u0027...learn to separate yourself from pain and get on with life\u0027",
"source_doc": "aOUUTEeIiS0.txt",
"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
"span_text": " cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of i"
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"quote": "\u0027...separate from the thoughts that\u0027s where behavior therapy comes into play\u0027",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
"span_text": "solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior"
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
"span_text": "horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss"
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
"span_text": "again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying"
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
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"source_doc_content": "SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we\u0027re told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we\u0027re overwhelmed and confused where does one even start so in an attempt to tackle this topic i\u0027ve invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don\u0027t have that many because we\u0027re generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i\u0027m certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what\u0027s going on if it\u0027s anything that we should be concerned about or if this is just part of our lovely mecfs package but i\u0027ve definitely found that once we have assessed that these symptoms aren\u0027t a sign of something else that it\u0027s just part of mecfs that putting too much concentration on them isn\u0027t really helpful\n\nSPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now\n\nSPEAKER_01: i\u0027m here to tell you why symptom comparison and stop the symptom thinking isn\u0027t actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i\u0027ve been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it\u0027s like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms\n\nSPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you\u0027re supposed to sip them in a tea this led me to many doctor\u0027s appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people\u0027s viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn\u0027t really help me much i\u0027d be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn\u0027t involve just trying to stop all my symptoms one by one\n\nSPEAKER_00: now that i\u0027ve recovered and i\u0027m sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it\u0027s a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we\u0027re the same if my symptoms match your symptoms and i recovered then that means that there\u0027s good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can\u0027t recover\n\nSPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people\u0027s are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately\n\nSPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it\n\nSPEAKER_01: another reason people reach out to people who\u0027ve recovered trying to compare symptoms is because they want them to tell them what to do and that\u0027s not honestly how i healed i had to look in the mirror and say liz i\u0027m going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition\n\nSPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn\u0027t match exactly and then from that what they take away is that they do not have a chance of recovering obviously that\u0027s a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it\u0027s not the same thing and the second way that it\u0027s if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn\u0027t actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027ve got one really annoying or frustrating or difficult symptom that you\u0027re trying to get rid of is probably frustrating to hear\n\nSPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you\u0027re worried that your symptoms are so numerous so scary so crazy and you want reassurance that it\u0027s still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there\u0027s tons of i don\u0027t mention but it\u0027s because listing every single symptom isn\u0027t going to help you get out at the end of the day the symptoms aren\u0027t the issue the symptoms are just your body\u0027s manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don\u0027t get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won\u0027t help you personally just use that to inspire you to perhaps give you some ideas but don\u0027t get too carried away don\u0027t compare\n\nSPEAKER_01: your symptoms with somebody else\u0027s your test results with somebody else\u0027s test results stay true to what\u0027s going to work for you certainly when it comes to test results knowing what somebody\u0027s blood reports were doesn\u0027t really impact or have any correlation to what yours were because it depends what your starting point was what\u0027s normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn\u0027t sign up for was to troubleshoot people\u0027s symptoms one on one\n\nSPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i\u0027m also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either\n\nSPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it\u0027s pretty traumatizing going back there i mean i look at it now and just words on a page but\n\nSPEAKER_01: this was the worst thing that ever happened to me and\n\nSPEAKER_01: if you\u0027re there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i\u0027m really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i\u0027m not a huge fan of labels because to be honest it doesn\u0027t change doesn\u0027t change anything what it\u0027s called doesn\u0027t suddenly change how you\u0027re feeling or how long you\u0027ve had it or how long it\u0027s going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it\u0027s useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don\u0027t make a difference and comparing your symptoms to somebody else\u0027s and are yours worse or better than theirs again that\u0027s something that i really encourage people not to get too caught up in i\u0027m a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that\u0027s severe for you it doesn\u0027t matter how it compares to somebody else\u0027s life it\u0027s all about your journey through and i guess that\u0027s the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you\u0027ve got this so my key message to everybody watching this is look at your own personal journey through this don\u0027t compare your results to somebody else\u0027s because your starting points would be different your whole makeup will be different there are so many different factors that can\n\nSPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody\u0027s experience of living with mecfs is different not only because how long you\u0027ve been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody\u0027s recovery plan and them selecting the things they want to try\n\nSPEAKER_01: needs to be tailored as well\n\nSPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you\u0027ve heard our thoughts it\u0027s just three of us we\u0027d love to hear yours as always this is how we learn this is how we grow this is how we get past this so let\u0027s keep the conversation going in the comments because we\u0027d love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i\u0027m sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you\u0027re doing well thank you for watching and i\u0027ll see you again soon\n",
"span_text": "t that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you\u0027"
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"quote": "\u0027...lack of sleep causes chronic back pain not the way around\u0027",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
"span_text": "so what were happening when you\u0027re in fight or flight your highest thinking party"
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"source_doc_content": "SPEAKER_01: hey everyone raymond here i am so excited as always as i am when i have stories like this to share with you i have rebecca toland with me she\u0027s in san diego so we\u0027re both in california which made scheduling this incredibly easy so grateful that she\u0027s joining me here today to talk to all of you here on my channel about her journey with any cfs she was unwell with any cfs for thirteen years before finally fully recovering so she\u0027s got a lot of really great stuff to share so i\u0027m really excited about this thank you so much rebecca for taking the time to do\n\nSPEAKER_00: oh it\u0027s such a pleasure ray lynn i\u0027ve watched your channel recently and i\u0027m just so touched by the heart you put into it it\u0027s really clear that you\u0027re just here to support people and just offer all the different ways that helped you and helped others recover so i\u0027m happy to share my story\n\nSPEAKER_01: i appreciate you saying that yeah it\u0027s really it\u0027s all the people like yourself put in time and effort and courage to talk about their story publicly like this\n\nSPEAKER_01: thank you very much yeah you were here to talk about your health journey so let\u0027s get into it can take us back to this all begin yeah\n\nSPEAKER_00: well before the symptoms started i was in my early thirties i was tv news reporter so i had like a very busy high powered stressful job but when i really enjoyed i did a lot of international travel i socialized a lot so i was busy i exercised it kind of did all the things that you think of doing in your early thirties and\n\nSPEAKER_00: i actually went on a trip to asia just for leisure but i ended up having a really traumatic experience when i was over there i was sexually assaulted and that led to a really grueling urinary tract infection that i got on a seventeen hour plane trip back and my whole system just kind of blacked out i actually sort of lost consciousness on the plane it was really an awful experience and when i got back to the states i was just really exhausted but i was still able to work and i still kind of pushed through things and i went to a few doctors i really sort of blocked out the trauma and i wasn\u0027t able to process that on a conscious emotional level and then strangely the next year around the same time of year it was like late fall i went back to asia and i was questioning the trip because i wasn\u0027t feeling that well that time i got these three colds kind of like back to back one was when i was there in china one was on the plane trip back and then one was once i returned back to san diego and then my system completely crashed after that i just went totally kaput i felt like i had the flu twenty four seven i had a lot of the quintessential me c f s symptoms i couldn\u0027t sleep at all overnight which was really the insomnia was a grueling one for me i was so exhausted for a number of weeks and even months i would say that i could hardly just walk around the house the brain fog was really bad i felt like i couldn\u0027t remember the name of you know a good friend or a colleague digestive issues i also started getting hot flashes and kind of like pre menopausal symptoms even though i was so young so that\u0027s kind of how all it began in a nutshell\n\nSPEAKER_01: so what did you think when all this started happening\n\nSPEAKER_00: you know i was so scared ray lynn i was just really i\u0027m sure like you and so many people can relate i was just terrified because although i had had some fatigue it started really coming on very suddenly after those viruses\n\nSPEAKER_00: and i didn\u0027t in any way think about the trauma that had happened to me or actually a previous similar assault that happened when i was nineteen none of that was in my awareness i really was just wanting to get well so i did use whatever strength i have to start researching and going to doctors and basically my mom was driving me around because i couldn\u0027t really drive or do anything i was really lucky that i lived in the same town as my parents and i sort of just started urgently going to doctors everything from allopathic medicine to natural path medicine to integrative medicine at that point to some specialists and they did diagnose me with any c f s which at that time was largely called chronic fatigue syndrome more than the me post viral syndrome some of them would say there was some fibromyalgia in there because of all the body pain although that also can be very typical with with c f s\n\nSPEAKER_00: and i think i remember thinking on the one hand i was relieved to have a diagnosis because i suddenly couldn\u0027t go to work i had to just tell my boss well you know i used to be someone who would work like sixty hours a week and i just i can\u0027t go to work anymore so it sort of helped me in that way but on the other hand it was really devastating because i remember particularly a natural path a doctor who i had so much faith in and i thought well he\u0027s you know he\u0027s natural he\u0027s going to help me recover in a really gentle way and he specialized in this diagnosis and he actually said like we we don\u0027t know what the causes and we there is no cure and really you\u0027re going to have to live with this i mean that\u0027s all i can tell you and i just remember bawling you know being so devastated and really feeling like this was just this death sentence but in a way a life sentence that i was given that i would have to live with for years\n\nSPEAKER_01: when you got this diagnosis\n\nSPEAKER_00: i don\u0027t think so i mean it wasn\u0027t something that i didn\u0027t know anyone that had c f s maybe distantly i had heard of it but i really didn\u0027t know much about it and of course the diagnosis chronic fatigue syndrome sounds like you\u0027re just you just need a nap but my life was like feeling like i had the flu twenty four seven and i couldn\u0027t even sleep that was really hard because i never got any relief from the symptoms i would usually sleep like a couple hours a night but no it was really new to me and i you know i had been a reporter so i started researching as much as i could and seen as many doctors as i could over really what became the next thirteen years\n\nSPEAKER_01: initial times to any of these doctors or practitioners that you were seeing recommend any sort of treatment\n\nSPEAKER_00: yeah there there were all kinds of things i mean like you i think i was on tons of supplements i was on probably forty or fifty different supplements at one time and i had all my little baggies and pillboxes lined up i didn\u0027t really ever see a change with that i went to dio a doctor of osteopathy who also practiced homeopathy and she put me on the anti candida diet so actually for years i wasn\u0027t even eating you know carrots or any grains or anything like that which really wasn\u0027t a diet that i liked i had been mainly plant based before but i was willing to do whatever and those things weren\u0027t making a difference so then i started really going to more specialists neurologists endocrinologist rheumatologists the rheumatologist actually suggested antiviral intervenious drugs and i had been a bit more natural but of course i was willing to try anything so i really thought this was going to work and my entire system crashed i ended up back in bed for months after those medications\n\nSPEAKER_00: i had done a lot of iv vitamins i got really into our your veda and i do think that kind of helped me live a little more healthy balanced life and start moving back into more plant foods but it didn\u0027t shift the symptoms i went to all kinds of energy healers and i actually did see a little relief with some of the energy healers but it would just be very short lived and i would kind of go back to my baseline oh gosh i went to even sleep psych their sleep psychologists their sleep doctors by the way there\u0027s every kind of sleep expert and that was still a really vexing symptom when i wouldn\u0027t sleep the symptoms would be a lot worse the next day and eventually i started going to see some psychologists because i was starting to connect\n\nSPEAKER_00: there was a lot of psychological you know trauma and grief that happened before the onset of these symptoms and in these years i should say not to sound like this is such a sob story but i know you really place a value on just being honest with our stories there was a lot of personal griefs my father was very ill and eventually passed away about five years into my illness my mother almost died and they were like my rocks i was single engagement had broken up because it was just so hard to sustain you know he didn\u0027t he couldn\u0027t really understand why i couldn\u0027t do anything anymore i was about to lose my house i had lost the career i really loved so it was just there was a lot going on and now what what i know in how i healed i see how all those emotional stressors were really activating my brain and nervous system and making the symptoms worse i didn\u0027t really make those connections at the time but i do think some psychotherapy was helpful just to kind of talk through some of these some of these griefs that were going on\n\nSPEAKER_01: a lot of heavy hard things you\u0027re hit with i\u0027m so sorry that you have to go through all of that how did this impact you know emotionally psychologically people understandably start feeling severe depression what was\n\nSPEAKER_00: thank you for acknowledging that i think those of us who go through this need to be acknowledged and a lot of times are really not in the health care system we\u0027re just sort of this body that is trying to get better but at times i fell into some depression i\u0027m lucky in that i never say deep into a depression and i never really actively thought about taking my life but i remember just years where i felt like what\u0027s the point of living at all i mean on doing is taking these supplements like eating foods i don\u0027t even like for what i have no purpose anymore it was really hard to socialize too because when i would it would activate symptoms so i wasn\u0027t doing a whole lot of that other than a couple close friends and family that would come visit so it did take its toll i think though for the most part i was able to kind of keep some just some hope and some optimism although doctors were saying we don\u0027t have a cure there was something in me that was like but this isn\u0027t me like this isn\u0027t my life this is not how it\u0027s going to go i know that there\u0027s something that can get well there\u0027s something in me even that is well and that can heal on this physical level and i was always a somewhat spiritual person but i started meditating and really practicing yoga and i think that sense of spiritual connection to something that was greater than myself really helped i think it helped with my emotions and helped just feel like there was some hope and there was there was some kind of broader picture than i was able to see right now you\n\nSPEAKER_01: made a lot of changes a lot of big changes like in your lifestyle and your diet and i think a lot of us do that or asked to do that right off the start i\u0027m just curious how you found that you know when i first got my diagnosis i was told you know more sugar gluten nor alcohol no more i mean i was drinking at the time but sugar and the gluten were still very much in my life and i had a raging sugar addiction and then i was just sent home and just like make all these changes live off of ko and it was really tough for me and then a lot of self you know because i was sticking to this plan all the time it was supposed to help so what was the process like for you making all of these changes oh my\n\nSPEAKER_00: gosh i can relate to all of that you know it was like not only are you totally miserable but we\u0027re going to take away anything you enjoy eating which is like one of the few kind of pleasures left so i was also on you know the gluten free dairy free sugar free i also i couldn\u0027t drink any caffeine or alcohol if i would just have a sip i would be shot for days even more so\n\nSPEAKER_00: i was on the elimination diet so there was just basically i was eating like protein usually either chicken or fish and cooked vegetables because i would get really bloated if i would have salad so yeah it was it was kind of miserable i mean it just sort of felt like this deprivation and i think too in looking back there was a part of me that really resented it because i didn\u0027t feel like i was an active participant at that point in my own healing you know really felt like i went to sort of more natural pathogen doctors because i thought there is going to be more inclusionary but in a lot of ways it was still like ok there take this medication take this supplement take this herb do this diet and i just sort of felt like it was being done to me and actually i did have a really perceptive doctor years later i saw for the c f s and although he didn\u0027t really help me with the symptoms he helped me emotionally because actually he said you know what i think you think i\u0027m going to tell you to take a bunch more supplements and more restrictive diets and i suspect that\u0027s actually perpetuating the trauma in which you felt you were in control of your body and now you\u0027re just being told what to do with your body by all these medical professionals and rayland i just started crying i was like someone sees me and i didn\u0027t even know that\u0027s how i felt but i think for those of us even if there isn\u0027t a trauma what i find with other people i meet who have c f s is often if not always there\u0027s a lot of stress beforehand and there can be a sense then whether it was existent before or certainly after the diagnosis of just being so powerless and so i started realizing with diet and everything else at some point i have to regain my agency and my power and my collaboration in my healing because otherwise i was resenting it and i and i just i think those diets didn\u0027t work partly because of that and partly because the root cause of my c f s was not that i wasn\u0027t eating enough kale right that wasn\u0027t the cause or that i wasn\u0027t taking thirty supplements a day\n\nSPEAKER_01: such a good point one of the things that i just love about these interviews is that i learned something about my own journey and i get more insight every single person i talk to hadn\u0027t really thought about you know and i make when i made the switch later on in my journey to plant based it was so easy i did it effortlessly but it was my choice and i had just it was my idea and i believed in it so in the beginning when those were imposed on me it was really challenging and i found even though i was thought i was committed i was forever trying to find work around like ok i can\u0027t have gluten i can\u0027t have sugar i really want some chicken fingers so i took some chicken and cornflakes and i deep fry them and then i think the sauce made out of like stevia\n\nSPEAKER_01: or you know like not healthy food at all but there was no sugar\n\nSPEAKER_01: right make all these desserts that were like raisins and somehow maple syrup and like why didn\u0027t sugar in there so i like diet sodas like diet orange soda so i get\n\nSPEAKER_01: myself up in the beginning with so much crap trying to like find me like ok\n\nSPEAKER_00: absolutely and especially i remember watching a video where you were talking about you know for me i just feel better on plant based diets and that\u0027s what i found too and so i think especially if you\u0027re being asked to eat in a way that just doesn\u0027t feel right to your body for whatever reason not that there is one right or wrong diet but for you there\u0027s going to be resentment you\u0027re right you\u0027re going to try to find ways around it that are necessarily nutritional\n\nSPEAKER_01: so what happened what\n\nSPEAKER_00: so let\u0027s see i think that you know this whole thirteen year saga had different phases and and i would say the first five years i was really impaired meaning i couldn\u0027t do much out of the house i mean i could still take care of myself which was really nice but my parents would bring groceries and things\n\nSPEAKER_00: then i would say like the next maybe five or six years i had a little more ability and mobility and i could do things like i could go to a local yoga studio and i would notice when i would do things that i would enjoy especially that was really calming and soothing i would get a little more energy so i mean i was doing like a lot of restorative yoga but still i was getting out i could see friends a little bit more but like not in the evenings if i saw a friend in the evening i have insomnia i wouldn\u0027t sleep all night\n\nSPEAKER_00: so but what i really noticed over time was kind of back to this point of personal agency and starting to like tune into really what works for me was i noticed when i would be in nature which i really loved when i would read poetry or i love listening to eckhart tolle i actually couldn\u0027t read a lot that was the thing because of the brain fog i could only really read people like eckhart tolle because he writes a few words and it means so much or i could read poetry because it was just a few words right but i started really getting into that i started writing poetry i started actually just more doing what gave me a little bit of peace or relief rather than just trying to fix myself and get rid of the symptoms wasn\u0027t that i totally gave up on it but i would say i mean this took well over a decade to kind of like get off the roller coaster because i just noticed again and again i was so exasperated by trying every last diet every supplement every i mean i one point i was doing like enemas every single night all these rituals deep detoxes ten days worth and i was just like none of these things have worked and so i just kind of started tuning into my own self and my own body and then i had this one experience which actually ended up being a blessing where i thought oh i\u0027ll try one more healer so this woman was supposedly a shamanic healer she was like a white woman in san diego who had done a little bit of training in the amazon and so she i went in for a session with her and she was kind of smoking her pipe and she asked me about the trauma and i actually started opening up for some reason and really crying and she changed the subject and said you know i don\u0027t think we should talk about this let\u0027s talk about my cat which i\u0027m dressing up for halloween and so i think somehow she got triggered or something but i felt so shut down and so numb after that and i wrote her out a two hundred dollars check i left there numb and i was just like i am never going to give away my power to someone else like here i\u0027m thinking this woman who\u0027s not even listening to me who\u0027s shutting me down is going to heal me and it\u0027s just not going to happen not to say i didn\u0027t think i needed help from people or that we don\u0027t need support but it shifted kind of the power dynamic because the situation with her was so ridiculous you know that i was paying her two hundred dollars to tell me about her cat costume now about twelve years in something happened i was actually meditating a lot i got me into transcendental meditation and kind of the inner teachings of yoga which really teach us that everything on the outside including our health comes from our internal state at least there\u0027s some origin with you know our minds and so i was just fascinated with all these philosophies and studies practices and it lit me up and i felt like i got to this point where some kind of surrender happened and i know that sounds really cliche but it\u0027s hard to describe i fell into this state of peace there was actually mental peace even though i still had the same symptoms and i kind of was almost observing myself there would be intense flu like you know aching but i felt it in my body but i was kind of watching it and there was this internal state of nonresistance or peace and it really wasn\u0027t something i tried to do although i had been studying about it but it kind of happened and interestingly that went on for a year i mean so it didn\u0027t actually shift the physical symptoms but i sort of was it\u0027s not like i wanted them to be there i mean this was this whole situation sucked it was treacherous it was a grueling but at that point somehow i wasn\u0027t fighting it and so i feel like from that place i really wasn\u0027t pursuing medical interventions i was eating what i wanted which which is like mostly plant based organic whole foods i just like that you know it felt good to my body it was kind of like intuition nutrition i would i couldn\u0027t work i was on disability and there was that bothered me i mean i wanted a purpose i wanted to contribute but i just kind of accepted this is where i am right now and so from that place interestingly as i started just like pursuing what i enjoyed i took this online writing class called right into light and i met this woman and she said oh i recovered from c f s through this type of mind body work if you want we can set up a phone conversation and i also got migraine so i was like well i can only talk on the phone for ten minutes but yeah i would love to do that\n\nSPEAKER_00: so we set up this conversation we start talking and she starts telling me all her symptoms were exactly the same you know and she had epstein bar and she had all these things and that she made this total recovery well i told her i could talk for ten minutes three hours later i actually got up and ran around the block like i had not ran in thirteen years i had something of like a mini spontaneous remission now this was not the end of the story you know symptoms did come back so i don\u0027t want people to think oh that doesn\u0027t happen to me it can\u0027t happen but what that conversation showed me was that i could recover and what really changed for me was she explained that all these years doctors had been saying these viruses were suppressing my immune system so it was like the epstein bar and ten other viruses that i just couldn\u0027t overcome and so to me i felt like that\u0027s this insurmountable physical thing but she explained she had all those diagnoses she had all those viral titers and what happened was she learned that it was more how her brain and nervous system were processing stress and just stuck in this hyper vigilant mode and essentially her brain had learned these patterns these neuropathways and she recovered and at the end of this conversation now you would think this would be infuriating but by this point i was so with her she said rebecca you\u0027re not sick you know and i think she kind of alluded you\u0027re just you\u0027re stressed you\u0027ve been through trauma your system stuck in this pattern but you can get out of it and i believed it i believed it one hundred percent like i felt it in all of me and my body reacted with that that burst of energy at least in that moment\n\nSPEAKER_01: wow so in that conversation it wasn\u0027t even as if you were doing some sort of you know therapy or work on yourself it was just this breakthrough of understanding of what was happening and it gave you this break from symptoms at least for a little bit exactly\n\nSPEAKER_00: exactly and that\u0027s a really good point because i think for me what the key was even though this woman wasn\u0027t a therapist she wasn\u0027t a doctor she and i had been a science journalist so i love science and she kind of explained the science of what can happen in our brain and nervous system with chronic fatigue chronic pain brain fog with all these symptoms and it made sense to me and so i felt like she was literally rediagnosing me which is crazy because she\u0027s not a medical professional but i felt like i can overcome this because it\u0027s now a matter of understanding this knowledge learning how i can calm down my nervous system start feeling my emotions start challenging myself more like getting back to more activities to sort of retrain my brain and it was kind of like to me and i\u0027m not saying this is for everybody but for me i felt like i finally heard the truth like this resonated with me with what was happening and it gave me hope that i could recover instead of just being like viruses or faulty genes or mitochondria or things i couldn\u0027t do anything about\n\nSPEAKER_00: and after i had that little spontaneous remission i ran around the block multiple times i knew i was on the right path i knew beyond a shadow of a doubt and that\u0027s all it was was knowledge i mean it was just information which is really crazy and i think it was her caring like she cared a lot to help me she spent three hours on the phone with me\n\nSPEAKER_01: absolutely incredible and it just it makes me question so many things about my own experience in my own story and you\u0027re talking about food and for years i couldn\u0027t eat rice it made me incredibly sick it was one of my food intolerances and even after i recovered i still have some rice feel sick i was terrified of rice and i lived in asia for eight and a half years so that was a challenging situation but just recently i just started trying having little tiny bits like oh i feel okay let\u0027s try to have a little bit more oh i feel okay and now i can eat copious amounts and i\u0027m fine and i just assumed okay my body must have healed it but now i\u0027m thinking you know it might have just been a brain association all those years that i had built up triggering that response and then as i built that confidence with like a little bit i\u0027m ok a little bit i\u0027m okay brought up and socialized not to attribute attribute our physical symptoms to something that\u0027s being caused by the brain like we don\u0027t even see the connection at all like there\u0027s a wall here where this stuff starts where this stuff starts and it\u0027s just exactly to see that that\u0027s\n\nSPEAKER_00: not the case so fascinating well exactly and you know what\u0027s so interesting we\u0027re raised like you say to see like a physical symptom has to have a physical cause but now there\u0027s actually a whole body of neuroscience and scientific research showing that there\u0027s just two studies out this year one out of harvard and one out of boulder but the basically shows chronic pain is caused and cured by a form of brain retraining by this specific approach because the brain generates pain and it generates pain as well as fatigue because it senses danger but that danger can be psychological as well as physical it\u0027s the same part of the brain that perceives it and so what\u0027s so ironic is that the doctor i ended up studying with to train in this howard schubiner who i highly recommend his book called unlearn your pain and he talks about fatigue he talks about these food sensitivities as well and he really helped me see it\u0027s like not necessarily that some food is bad for us or some behavior is that our brain perceives it so if you eat a poisonous berry the next time you see that berry you\u0027ll get queasy because your brain via your body is trained to protect you but you might see another berry like a blueberry and you could get queasy because that part of the brain the emotional limbic centers aren\u0027t like particularly discriminating they\u0027re just sort of picking up information in our environment and if we\u0027re stressed or in our nervous system hypervigilant they can mistake that like rice isn\u0027t good for me or whatever we\u0027re told by our doctors isn\u0027t good but this dr schupner actually led me to believe and it became true that i could eat all these foods it\u0027s just that my brain had become so scared of them so of course this is not true with an actual like food allergy like peanuts and things i mean that really does exist but with the sensitivities to food i know it kind of blows your mind and i\u0027m not trying to say that people should just start eating all these things i mean you have to decide for yourself but what you\u0027re describing to me is interesting that it sounds very similar when you can kind of retrain yourself that you know it wasn\u0027t an innate food allergy it\u0027s an association or a condition response it\u0027s like pavlov\u0027s dog right it\u0027s the same dynamic\n\nSPEAKER_01: yeah and i think thank you for taking the time to explain all that because i think that\u0027s an important distinction because i think a lot of us myself included sometimes get a bit put back or like are you saying just imagining this whole thing and it\u0027s not that it doesn\u0027t exist you know our brain is a very real part of our body it\u0027s another organ that we have so it is creating conditions in our body it is something that is real it\u0027s just not maybe caused by the organ that we think is causing it it\u0027s originating from a different place in the body\n\nSPEAKER_00: yeah i\u0027m so glad you said that because i know like all of us who have dealt with cfs we\u0027ve been told like you\u0027re making this up or we\u0027ve been doubted so i so get that people are sensitive to this and these symptoms are a hundred percent real and the people who i\u0027ve mentioned dr sarno and dr schubiner whose work really helped me they\u0027re very clear this is a hundred percent real but like you said the brain is like the master control so like we know the brain and the nervous system are constantly scanning for danger and if they sense it they\u0027ll go into flight fight or freeze mode to protect you so either to help you to run or fight and you\u0027re flooded with stress hormones or to shut you down if the danger seems too big i think with cfs the danger seems too big a lot of times and we become frozen and our brain and nervous system is trying to help us it\u0027s creating real physical symptoms they could not be more real\n\nSPEAKER_00: but in my case at least i came to believe that the things i was told were causing the symptoms were more like effects like the epstein bar i\u0027m sure was higher because my brain and nervous system weren\u0027t functioning optimally and so when you\u0027re prepared to run or fight your digestion is not a priority your hormones aren\u0027t a priority all these other things are not working as well that\u0027s true the immune system isn\u0027t a priority but what i found for me is that wasn\u0027t the answer because that was the effect not the cause and the cause was like going to the brain but also like not to say this is caused by emotions because i know that can put people off and they can think oh i\u0027m being told i\u0027m just emotional or depressed it\u0027s not that at all but one thing i really feel is missing in the medical system is acknowledging we are living breathing feeling human beings and back to when darwin wrote about the evolutionary value of emotions emotions are actually what tells our brain and nervous system whether we\u0027re safe or not safe whether to trigger the flight fight freeze response right if there\u0027s fear that response the nerve firing patterns change\n\nSPEAKER_00: the hormones change to help us so emotions are the cue so to act like i just felt like doctors didn\u0027t ever ask once was there anything stressful possibly happening in your life before you went from being this active tv news reporter to being homebound no one asked that and it\u0027s like where\u0027s the heart and the humanity much less the neuroscience and i don\u0027t mean to blame or implicate i know everybody\u0027s doing their best but i think we need like more trauma informed care and even more understanding that the brain and the nervous system do react from fear in perpetuating symptoms\n\nSPEAKER_01: i find it really interesting you talked about the pain because there\u0027s so many people who are living with chronic pain and unfortunately with my experience i had some but it wasn\u0027t serious and i just i don\u0027t know how people function with that level of chronic pain in their life and then recently i reviewed the curable app because people kept telling me about it and through that process just learning about the app how it works reading reviews reaching out to people the mecfs community asking about their experience with it and a lot of people are having significant success or completely having their pain gone because of using this and it is coming from the premise that the chronic pain is originating in the brain so is that all part of like the process of your recovery is there something similar\n\nSPEAKER_00: such a great question i\u0027m really glad to see curable and other things like that are kind of gaining more acceptance curable is based on this exact same approach so one of the doctors i mentioned howard schubiner is on the board of curable john sarno has passed away but he was kind of considered the early pioneer in this so curable is based on this and i actually discovered not the curable app but john sarno\u0027s work in this this whole mind body approach much earlier in my cfs journey but i discovered sarno\u0027s book healing back pain which by the way back pain neck pain all these chronic pains are also usually caused by the brain and nervous system rather than a structural issue but i couldn\u0027t see how to apply that to myself it was like but i have exhaustion i have brain fog i have all these other things and i think when i met that woman i\u0027m ever grateful for kathy and she explained she used a very similar approach as curable and she just sort of used fatigue as a synonym and later i reached out to howard schubiner and\n\nSPEAKER_00: did a training with him and i asked him and he said it\u0027s the same thing because if you think of fatigue there\u0027s a part of you that doesn\u0027t feel safe and it\u0027s sort of like your system\u0027s trying to like shut you down and like keep you at home and it did feel like that for me like i think there was a perception this is subconscious by the way because ninety percent of our brain and emotions including our emotions are subconscious so we\u0027re not aware of them but i think that for me there was this perception like the world\u0027s not safe anymore after that assault and it was sort of like my system trying to keep me at home now it is a bit of a painful way to try to protect you but you know this we\u0027re dealing with also kind of some reptilian parts of the brain fear based parts of the brain but anyway to go to your point i haven\u0027t done the curable app because i already recovered through some of the other books and through coaching but it\u0027s it\u0027s really the same approach and people can apply it to brain fog and digestive issues and fatigue as well so\n\nSPEAKER_01: my body approach what would one day one week in your life look like\n\nSPEAKER_00: so do you mean like more when i was recovering or just today yet more when i was recovering ok so yeah both because i still i still integrate it but i would say when i was still over that first year i was every day doing these meditations called somatic tracking so i\u0027m really glad curable i\u0027m told by some of my clients now has somatic tracking meditations on there but basically you don\u0027t even need a meditation but it\u0027s helpful to be guided where you\u0027re just kind of tracking sensations in your body so it\u0027s like the fatigue might end up feeling like you know heaviness through your whole body or say i would have a lot of burning in my arm so i would bring my mind into that but you\u0027re getting these messages of safety like i\u0027m safe and ok there\u0027s actually nothing wrong with my body so you\u0027re kind of retraining your brain and i would do that every day i would actually do it every night as well and i feel like it broke the insomnia habit and i say habit because that\u0027s also kind of a subconscious learned behavior that the bed becomes associated with anxiety so i would do the somatic tracking usually a few different meditations every day i would i just love reading the books there\u0027s different podcasts on this approach curable has one there\u0027s others that i really like called tell me about your pain is one of them so i was learning about it and then i would like go and start to do things i was like oh i\u0027m going to go try to walk a half a mile or a mile or something at this point i would just walk a little more and i would notice the symptoms so as i\u0027m doing it the symptoms are rising i\u0027m getting that malaise and i would just be like reiterate like you know i\u0027m ok i got this i i know what\u0027s going on and that\u0027s like how you retrain your brain that you can do these things which i think a lot of people do anyway through graded exposure you know honestly it doesn\u0027t take a lot of time this approach it\u0027s kind of just learning it doing the meditations i would see this coach once a week in the beginning then every other week and just started really adding on activities to my life including food i started eating more things that i wanted and at first like you do have a reaction because your brain thinks that\u0027s not good for you but then within usually a few times i could just eat it ok it\u0027s crazy i know it does sort of seem wild and i think that there has to be a certain pacing and timing with this because i\u0027ll say i was really ready i would have been able to just jump into this years before when for one i didn\u0027t really believe it and i was bed bound so i mean just to have like compassion for people i think that was another thing i really brought in raylan and again it\u0027s not that it took time but i started bringing in self compassion when i would get symptoms i would just ask how am i feeling emotionally because with this work you want to bring it back to the emotions because we so focus on the physical symptoms but you really want to tend to the emotions which are driving the state of the nervous system so it\u0027s like how am i feeling emotionally and i would acknowledge i\u0027m scared i\u0027m really scared i\u0027m really frustrated and then i would just kind of be compassionate with myself and i still am to this day like that\u0027s really hard you know just talk to myself i\u0027m so sorry what do you what do you want or need right now instead of just pushing myself i would challenge myself but if i needed to back down i would and sometimes take a break and just kind of tune into like what do you want or need it just has gotten to be and now over it\u0027s been a few years a much more kind of personal attentive way of dealing with yourself i mean it sounds funny to be talking to yourself but i think we all do anyway so it\u0027s just doing it in a much more compassionate way where i used to beat myself up like you had said for not recovering i was like i\u0027m failing what\u0027s wrong with me you know and i mean that dr schumer and others will explain that self criticism actually does activate the danger alarm signal in the brain and the nervous system so it actually can feed into symptoms\n\nSPEAKER_00: and so yeah just being a lot more like compassionate with myself like this is really hard but we can do hard things and we\u0027ll pick it back up when when it\u0027s time\n\nSPEAKER_01: and i know you and i have talked about before\n\nSPEAKER_01: personality traits but some people at least\n\nSPEAKER_01: is kind of illnesses people who drive themselves hard people who are critical of themselves so do you think that plays a role in symptom perpetuation or impacts recovery in some way\n\nSPEAKER_00: you know when people read john sarno\u0027s books and there\u0027s one called the mind body prescription and he describes the personality type of people who get chronic symptoms and he does talk about c f s but he also talks about chronic pain and other symptoms that he believes had an origin in the brain and nervous system and he describes like perfectionist check right people pleasers check maybe you\u0027re doing things for other people instead of for yourself people who are like really conscientious hard driving\n\nSPEAKER_00: put a lot of pressure on themselves to do things well and i just felt like i was seeing myself in those pages and as i meet people with c f s and you meet so many people\n\nSPEAKER_00: i do see that pattern a lot like we\u0027re and also and not just that with myself with a lot of people i meet it\u0027s like not only are we putting all this pressure and stress and even sometimes criticism on ourselves but we\u0027re holding the emotions it so it becomes kind of like a pressure cooker right like if you have a water that\u0027s boiling with the lid on eventually it\u0027s going to burst because we\u0027re holding in all the pressures i remember i know i keep bringing him up but he\u0027s such a kind man and i think he\u0027s really very forward looking but dr schubiner in a training was saying people who get c f s and these chronic symptoms they\u0027re really nice people like i get to work with the nicest people right because it\u0027s not people who take out their stuff on other people but the flip side of that is like kind of holding in the emotions\n\nSPEAKER_00: part of that too i\u0027ll throw in i did some journaling like expressive writing to kind of like really just get out all the frustration i didn\u0027t mention that earlier in my practices but just to kind of like let myself really journal and write about anything that i\u0027m too nice to say to anyone\n\nSPEAKER_00: that that was actually that was helpful and then yeah back to your point the personality traits i think just learning that you know we all kind of learn this with with any c f s like we can\u0027t be perfectionists right like some of us i mean i was lucky if i could just take a shower some days so it kind of softened and that was that was a good thing but then when i recovered and went back to work i did see some of those tendencies come back and i do actively work with it where i\u0027ll notice if i\u0027m pushing too hard like if i\u0027m feeling stressed or pressure like i got to gotta got to get these things done i can start getting a little fatigue and i can also start getting i recovered from interstitial cystitis through the same work the bladder pain i can get like little hints of it but i\u0027m always able to link it to like emotional stress either that happened to me or that i put myself under\n\nSPEAKER_00: and once i\u0027m aware of it usually the symptoms subside or sometimes i\u0027ll do like the somatic tracking meditation i mentioned to you or something like that but i think i softened you know i still i still have some of that you know i don\u0027t think we have to like totally change who we are to get well again but i found it was a wake up call to be more kind to myself and more authentic in who i always was where i think in many ways before i liked my life as a t v news reporter but in a lot of ways it wasn\u0027t really me i mean i do tend to like a quieter more introspective life i like to do more writing and i think a lot of times it\u0027s like more finding who you really are and who you really are in treating yourself like you would treat a good friend i think these things can actually help more than we know and they have helped me a lot and i feel with a lot of people that it can really help them to make those connections like this isn\u0027t just unkind to myself like it\u0027s actually affecting my health\n\nSPEAKER_01: and light bulb moment for me when you\u0027re talking like oh my goodness the anger and how we are kind of really nice people really like her community\n\nSPEAKER_00: right we\u0027re so nice which made\n\nSPEAKER_00: you know a joy\n\nSPEAKER_00: but you know who else has helped me more recently is kristen neff\u0027s work on self compassion because a lot of times when we are like hard driving we just take it out on ourself but to realize like this is really really hard like to have compassionate compassion on ourself is also really helpful and can soften the blow\n\nSPEAKER_00: all these losses yeah i\n\nSPEAKER_01: think that compassion piece is massive and also that release i remember i was interviewing daniel on this channel and he\u0027s just incredible and i learned so much from him as well but he talked about how important it is to journal your anger and i thought i\u0027m not angry i don\u0027t have to try it so i added it to my morning journaling practice my angry but i was angry about a lot\n\nSPEAKER_01: of just i thought he was crazy so it is a little bit of that bottling and you know i was and i was born and raised in canada we\u0027re very strongly socialized to be polite and keep\n\nSPEAKER_01: waves and so yeah it\u0027s just so much happening with the emotions and our personalities and how we treat ourselves how we interact with other people it\u0027s just really really important things\n\nSPEAKER_01: incredible and get up here on the screen somewhere if you want to check it out i was giving it a watch because he\u0027s just\n\nSPEAKER_01: when you when you had this realization of what your path was going to be and you started doing all this work how long did it take you from you first started when you got to a place where you felt pretty much functionally recovered\n\nSPEAKER_00: i would say that i had that first boost which was amazing for a few days to actually like and i had been going through a really symptomatic period where i was kind of back in bed a lot of the time it was in the early winter of two thousand and eighteen and to go from that to running around the block and actually feeling pretty good was stark but then i would say it took about probably eight or nine months till i felt like i\u0027m really recovered and even probably a year before i was adding a lot more things like back to some international travel so in the mind body way of thinking and this learned associations we\u0027re talking about because i had had these traumas happen overseas so i had the assault i had that airplane trip i told you about so when i would try to go near an airplane i mean my brain i would get so many symptoms but i started connecting this is just like a perceived danger even though i\u0027m going to a different place so it took maybe a year to kind of get back to some more travel and being really active of course that was before the pandemic i\u0027m not doing a lot of traveling but yeah and honestly i still incorporate this in my daily life you know i still love kind of doing a somatic meditation throughout the day if i notice myself getting stressed or pressuring myself or maybe just not feeling quite tipped top i just sort of check in what\u0027s going on emotionally notice what my thoughts are it just becomes a way of life but i think yeah it\u0027s been wow three years now feel really grateful i\u0027m at this point where i know there\u0027s so many years where it\u0027s i would never want to go through it again honestly and i wouldn\u0027t want anyone to have to it\u0027s so hard but i am at this point where it\u0027s like i\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single person i talk to every single person i\u0027ve interviewed recovered something similar they\u0027re just a better place than they were before and they\u0027ve learned so much such a weird thing like i used to my own journey i\u0027m like do i have\n\nSPEAKER_01: a little bit myself even just thinking about being grateful for that hell what i take it away if i had choice and it\u0027s just such a crazy thing to think i don\u0027t think i would just mind blowing and i\u0027m sure if someone had said that to me when i was really in the thick of it i would want to punch them in the face but i would just\n\nSPEAKER_00: hold it exactly but you know to me that\u0027s like a really form of going to the acceptance and healing to get to that point where it\u0027s like how i would take it away i\u0027m grateful for what i\u0027ve learned and just to kind of share that that a lot of lessons come i mean i see it as sort of like for me and i see this with a lot of people to some degree some of the things that led or fed into the symptoms not to say it was our fault there\u0027s a lot of things we don\u0027t understand about this disease but some of the things that fed into it we have the chance to kind of rebalance in ourselves and then they make the quality of life a lot better like turning self criticism into self compassion learning to take more personal empowerment in my case instead of just thinking that doctors or someone else is going to fix me or heal me and granted it wasn\u0027t their fault because i was also kind of giving them that power but realize like wow there\u0027s so much resilience inside and for me i\u0027ve learned nothing\u0027s going to work unless i intuitively feel right about it like if i\u0027m doing something as a means to an end whether it\u0027s about my health or anything else it never goes well it just never does so like retapping into that intuition has been a big one to what\n\nSPEAKER_01: did it feel like for you after so many years being unwell to relatively quickly recover after twelve or more years\n\nSPEAKER_00: i remember feeling every day waking up like a kid like oh my gosh i have energy i can go take a walk i can at that point it wasn\u0027t necessarily back to running but i can go explore the world anything i could do just felt like it was brand new like i was learning it for the first time i remember i went to a zoom class and this would have been some months in to the recovery but the teacher i mean i\u0027m not like the most you know coordinated dancer but i do love to dance and i felt like everybody else there was like following in steps i never taken zoom but that was this craze that happened when i had c f s so i was like completely like the class is going one way i was going the other way i was so happy i was overjoyed and there must have been like eighty people in the class at the end of it the teacher came up and she\u0027s like i have never seen someone so happy in this dance class like regular zumba people so it was like i was so happy that i could dance so it is it is amazing i would kind of question it sometime and i would be like but i would have symptoms that would come up i\u0027d have flare ups a lot so i was kind of reminded like ok when i would kind of question like is this real you know it was like it is real but it yeah it\u0027s a quality stabilize i think now things for me like maybe there\u0027s a little less of being able to do things but there\u0027s definitely more appreciation kind of more of like a stable appreciation every day for just simple things that aren\u0027t that simple when you have me right taking a walk meeting a friend being able to work big one or just do what you really want to do\n\nSPEAKER_01: i notice it a lot when i just have a really busy day and i go through this crazy day or maybe a really busy week and i mean i get a bit tired i\u0027m still human push yourself so far\n\nSPEAKER_01: look what i can do this is incredible and i still have these moments even though like you it\u0027s not you know the little things you start used to it but i still\n\nSPEAKER_01: mirror because it took me a while to fully trust it it was like a tentative like here\n\nSPEAKER_01: might hear me gloating and it might come back it\u0027s a good it\u0027s an amazing place to finally be and i only recently just got to this place where i feel comfortable and like ok it\u0027s fully behind me it\u0027s really amazing because i know for so many of us for all those years if you like you\u0027re never going to get there we did it yeah\n\nSPEAKER_00: yeah i mean recovering from c f s is the hardest thing i\u0027ve ever done by far it really is amazing sometimes you kind of question it but i think that\u0027s a good thing because it makes you appreciate it right and i saw your video recently talking about i know this is behind me and it actually gave me more confidence i was like wow she\u0027s got like such certainty that\u0027s that\u0027s amazing because i think i do sometimes still question it a little bit\n\nSPEAKER_00: but it\u0027s all kind of in stages right yeah it\u0027s all stages and then you get to the point where you feel it\u0027s behind you and you\u0027ve recovered but yet you have all these things you\u0027ve learned and that you still integrate\n\nSPEAKER_01: it\u0027s a good place to be and that\u0027s why i just did that video because i didn\u0027t do it until now because it was the first time realizing\n\nSPEAKER_01: trusting this is behind me it\u0027s interesting\n\nSPEAKER_01: like so many of us this whole experience shapes your focus for your career your passions so porter\n\nSPEAKER_00: right no i\u0027m not i for so many years all i wanted to do was get well and go back to being a news reporter because i really did enjoy that i knew i wanted that profession from the time i was in sixth grade you know i wrote my career report wanted to be a journalist but i changed so much along the way when i did finally recover there was just nothing in me that really wanted to go back to that i thought about it but also this the nature of news had changed it\u0027s so two hundred and forty seven now and it\u0027s a little bit insane and also i think what i was so incredibly struck by how many practitioners i went to fifty doctors and healers over the course of thirteen years i spent hundreds of thousands of dollars and the thing that helped me was this woman speaking to me like really caring about me listening to my story asking what had happened what stressors happened kind of explaining the science and i covered through that and so i just was led to train in that field even though i had recovered myself i did a number of trainings in my body training nervous system life coaching and things over a couple years and then i really call myself a mind body coach so i work with people really with all kinds of diagnosis that are generated by the brain and nervous system a lot of people with any c f s come to me but it\u0027s also people with chronic fatigue chronic headaches\n\nSPEAKER_00: back pain things like that and i should say not everything is generated by the mind and body i mean there are tumors there are fractures there are infections there are things that actually have a pathological cause that can be treated and should be treated right it\u0027s just when there\u0027s things that don\u0027t seem to have a clear cause or a clear cure that we kind of look more to this connection so yes i work with people one on one and i teach group classes because it is it is a different paradigm so i feel like\n\nSPEAKER_00: people can can learn about this approach in a really inexpensive way they can get some of the books or listen to the podcast but it is sort of important to see if it resonates or not because part of what the healing is as you heard with my light bulb moment is actually really getting it that like the cause of these symptoms and that alone can turn down the fear of the in the danger signal in the brain which calms the nervous system which calms the symptoms so because of that i started teaching classes because i saw it was really important for people to kind of have knowledge and different meditations and it\u0027s been really fun to be kind of in community with people so that\u0027s what i do now full time and i write about this quite a bit and use my journalism or writing about my body healing i blog and that kind of thing and it really does feel like my calling you know it feels like something i would just do for free because i want to do it but it has i got to this point where it\u0027s like ok either need to get another job because i\u0027m off disability or really make this my vocation i just decided i wanted to do this full time so it\u0027s been interesting growing my own business but it\u0027s really it\u0027s from my heart and i really love it it\u0027s amazing to see people not just recover but like learn and heal and grow as people\n\nSPEAKER_01: i think that\u0027s just incredible i don\u0027t have to tell you or anybody watching that there is such\n\nSPEAKER_01: out there i think that\u0027s why so many of us are silver lining or you know another gift of this whole thing we come through it and then be compassionate about wanting to connect with the other people who are facing similar things because we see this massive gap in the medical system with millions of people in it that are just lost and alone and trying to figure this out and not getting\n\nSPEAKER_01: many of them any kind of hopeful support so on your website on like it\u0027s just\n\nSPEAKER_01: pulling each other out of this together which i think is a really incredible thing so i\u0027m just so grateful for you and the work that you do and that you\u0027re out there providing this kind of support\n\nSPEAKER_00: thank you rayland i\u0027m so grateful to you honestly i\u0027m so touched by looking at how much you give out how much you put out to do this just to support the community it\u0027s clear that your heart is so in it and you just really want to help people and i know that you\u0027re a lifeline for a lot of people so thank you\n\nSPEAKER_01: it\u0027s really heartbreaking thing to see how many people are still suffering specially when you know that suffering so intimately so yeah you know i used to think when i first started doing this channel people would say reach out to me and beautiful messages because of you because of your channel and the people on your channel i have hope like\n\nSPEAKER_01: this is worth it just for that just for that and the more time people reaching out to me because of the people on your channel i found a way to recover and fully recovered again and it\u0027s just this is just\n\nSPEAKER_01: the most selfish thing i\u0027ve ever done because i get so much out of it it\u0027s really rewarding so it\u0027s a good motivator to keep out of really incredible thing to be able to connect with people in this way even if you can help the teeniest tiniest little bit it\u0027s really amazing so if people want to learn more about the work that you do or follow you in social spaces how can they do that\n\nSPEAKER_00: the best way is probably through my website which is just rebeccatolan com because i have some like free somatic meditations on there if you want to try it out i have a blog i have loads of just free there\u0027s a resource page and a media page and a lot of it is sort of geared to how you can use the approach you would find in the curable app but for fatigue because a lot of people that try that approach are like they\u0027re not talking about chronic fatigue much less mecfs which we know is not just fatigue so that\u0027s really the best way i\u0027m also on facebook but i\u0027m just not a huge social media person so probably the website and\n\nSPEAKER_01: of course all of this will be available in the video description so for people watching just expand that and you\u0027ll find all of that there i highly encourage you to check it out and rebecca you\u0027ve mentioned a lot of really great resources and books and so forth so we\u0027ll make sure to have a full list of all of those things linked below as well so if you\u0027re interested in learning more about any of these doctors or these books that rebecca has referenced that will be there and if you joined this video i\u0027ve got a whole playlist of full recovery stories just like this one i\u0027ll link it up here it\u0027s just really moving really inspiring stuff and i learned something from every single one so i think yeah i\u0027m just so grateful to people like yourself i\u0027m grateful to you rebecca for doing this thank you so much for doing this today\n\nSPEAKER_00: oh it\u0027s so my pleasure likewise ray lynn thank you\n\nSPEAKER_01: and thank you to all of you who are watching i cannot believe the love and the support you guys throw my way with everything you\u0027re going through it\u0027s just it\u0027s so moving so i\u0027m just trying to throw that all right back at you and give you some stuff that hopefully is helpful so looking forward to your thoughts and your comments in the video description let\u0027s keep the conversation going rebecca and i will answer your questions there as well so thank you again rebecca thank you everyone who is watching whatever you\u0027re facing keep going hang in there you have totally got this things can and will change and good for you for watching videos like this and all the way to the end\n\nSPEAKER_01: throw a thumbs up in the in the comments if you made it to the end because you\u0027re a superstar\n\nSPEAKER_01: that\u0027s it for today thanks for watching and i\u0027ll see you in the next video\n",
"span_text": "\u0027m grateful for the ways i\u0027ve grown that i don\u0027t know if i would have otherwise you know i might still be pushing myself and beating myself up and trying to really find my own sense of self esteem through my career which i largely realized i was doing to try to feel better about myself but now it comes more from inside you know there\u0027s just more acceptance and things so i think these all can be gifts like whatever your path is you know we all kind of learn these lessons and i know it\u0027s at some point that\u0027s really annoying to hear but right and i get that but i do feel yeah i live a lot more balanced peaceful life than i used to for sure\n\nSPEAKER_01: is a massive gift at this experience or it can be every single"
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
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"quote": "\u0027...book by john sono ... back pain gone ... health problems went away\u0027",
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar"
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward of"
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "rm\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some o"
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
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"quote": "\u0027...most folks come because they accept this approach\u0027",
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_00: what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: so surgery symptom the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological constructs it turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so i could most of our practice in two thousand and nineteen because i was so frustrated seeing so many people badly damaged by spine surgery i\u0027m seeing so many people go to pain free with minimal cost no risk process\n\nSPEAKER_00: if you or someone you care about is struggling with long covid or me cfs you are in the right place and you\u0027re about to hear one of the most eye opening and information packed conversations in the chronic illness space today we\u0027re diving into what\u0027s actually driving chronic symptoms not just physically but mentally and emotionally and spoiler although it\u0027s not all in your head which we always knew it is deeply wired into your nervous system through something we\u0027ll be exploring right now called threat physiology if you\u0027re new here i\u0027m raylan eagle and the conversations you will find here are like no other in the chronic illness space because we explore all paths to recovery if it helps people heal we talk about it the goal is to learn together and help each other find a way out and today i\u0027m thrilled to be joined by the incredible dr david hanscom he spent over thirty years as a complex spine surgeon until he realized he had to walk away from the operating room to help people truly heal from chronic pain and his own fifteen year journey with pain and many other symptoms led him to an unexpected discovery anxiety looping thoughts and unconscious stress patterns were actually at the root and once he addressed those he finally fully recovered and now he teaches how to shift from threat to safety physiology interrupt repetitive unwanted thoughts and work with the unconscious brain where most pain actually begins and according to him and so many other respected professionals in this field this approach works not just for chronic pain but also for anxiety depression and yes even me cfs and long covid so if you\u0027re stuck in fear loops if your body feels like it\u0027s always on high alert or if you\u0027re just exhausted from being told that there\u0027s nothing wrong with you when you know that something is my heart goes out to you and this conversation is absolutely for you so let\u0027s dive in dr hanscom wonderful to have you here thanks for doing this yeah\n\nSPEAKER_01: thank you i\u0027m excited to be here\n\nSPEAKER_00: oh my goodness such a vast amount of knowledge and experience you have on this topic i can\u0027t wait to get into all of this i\u0027m sure people would love to hear a little bit before we get into the details of all of this just your journey how did you end up doing this work that you were doing what\u0027s your experience been leading up to today\n\nSPEAKER_01: well i\u0027ll try to keep this story relatively short but basically practice complex deformity surgery in seattle washington for about thirty two years and about four years four years into my practice around nine hundred ninety i was in seattle right across the five twenty bridge and at the time you know i was in my practice i was a young gun you know just going after it hard and i didn\u0027t didn\u0027t even know what the word anxiety was you know become a major spice or by having an anxiety and also in the five twenty bridge in seattle i had a panic attack what is this and i look it up i didn\u0027t know what it was and you know it\u0027s basically just regulated nervous system it\u0027s an ultimate anxiety reaction and from that point on for the next thirteen or fourteen years i cannot come out of this hole so i develop seventeen different symptoms of migraine headaches itching scalp skin rashes back pain neck pain can sleep ring in my ears and my whole nervous system sort of fell apart but nobody could tell me what was going on so part of it i went to counseling for like thirteen years psychotherapy trying to figure this out and things got even worse and it wasn\u0027t till two thousand two thousand and three things get extremely bad that it sounds odd but sort of gave up fighting i didn\u0027t know what else to do and inadvertently as you\u0027re not certain turned out sort of to be the answer because we\u0027re eventually learned that with the brain be so neuroplastic whatever you\u0027re fighting and trying to fix actually becomes reinforced thirteen psychotherapy which actually reinforcing the pain circuits not help them so bottom line is i q out of my also symptoms around two thousand and four and i\u0027ve been pretty much symptom free for over twenty years and i never thought this past never thought this was possible and i came i went into it by accident i came out of play accident it to me about twenty years to figure out what happened the last five years who form a scientific international study group that she goes into the science of chronic illness and now i actually know it figured it out has been about a thirty five year quest to figure out what happened to me that day on the bridge\n\nSPEAKER_00: and from all of your learning from what happened to you how does this tie into your work as the spinal surgery and how you then proceeded to approach treating patients\n\nSPEAKER_01: was starting out interim medicine so he\u0027s to be has sort of a whole person approach right from the beginning so i always see a piece a few times before surgery or to make sure they get physical therapy medications etc still a pretty aggressive surgeon but a lot of the surgeries weren\u0027t working very well so seattle at the time i was there between run nineteen eighty six to nine hundred ninety five was doing nine times the rate of spine fusion per capita as any place else in the country and so i was part of that team i was enthusiastic i feel guilty if i cannot find a reason to do surgery and i started to think what i did but basically turns out we are operating on normally aging spines the success rate of doing a spine fusion back pain is about twenty percent is a big operation and i thought it was like ninety percent but i knew my results were as good as i wanted to one of them to be and my got mine up to about forty five percent but it was because of the surgery is because of the rehab so ninety ninety three in that paper came out i just quit doing surgery for back pain but i didn\u0027t know what to do so meantime i spiral into this deep hole of chronic pain and multiple symptoms and so i just sort of did the best i could not operate in nine hundred ninety nine i moved to sunny idaho in a private practice sole practice and i didn\u0027t have any resources so i started doing everything by myself and i knew that there are some tools that work in long story short i took a surgeon\u0027s approach to non operative care surgeons if you address sleep is number one people weren\u0027t sleeping we found out that lack of sleep out of study in israel so that lack of sleep actually causes chronicle back pain not the way around sure goes interesting so hard but the data also showed only five percent of surgeons were five in a physicians were actually addressing sleep so i started doing that i handed a little book called feeling good but david burns which is cognitive behavioral therapy i did have a psychologist and then david started to do some expressive writing so we started that people started getting better always to get physical therapy and rehab so that was in place i was still as medications and then would you not really in a clear way was life outlook so is jumping ahead twenty years it turned out that the biggest factor keeping people in pain is anger but i thought anxiety and anger were psychological construct in turns out it\u0027s just the sensations generated by your body when you\u0027re in fight or flight so you feel anxious your body says danger show you your fight or flight response starting if you can\u0027t solve the danger you can more a fight or flight response and you become angry so turned out anger and anxiety are physiological survival responses that we have no control over zero in a for my bruce lipton who is the author of the book biology believe put out really clearly we have zero control out of anxiety and anger and we now call it threat physiology and so anxiety is active physiology anger is hyperactivity through physiology and the problem with physiology your entire system fires up so your neurotransmitters in the brain go from calming to start a tory your stress hormones of course kick in place there\u0027s a little molecule in the bottle called cytokines as you all know little molecules that go from such from cell to cell there\u0027s inflammatory ones in profile tory ones in under fight or flight your entire immune system lights up and then cortisol drains fuel out of your body it\u0027s been known for fifty years that chronic stress breaks down the body i e chronic fighter flight so any athlete has to train then rest in order to regenerate if you\u0027re in constant stress fight or flight your body breaks down it turns out that every chronic disease with few exceptions are related to chronic stress that\u0027s mental and physical diseases so turned out the anxiety depression bipolar o c d and schizophrenia are basically metabolic inflammatory disorders really so critical is that this physiological response is about you know half a million times stronger than your conscious brain so your conscious brain unconscious brain processes about eleven million bits of information per second take us how much your process your conscious brain processes\n\nSPEAKER_00: i couldn\u0027t begin to imagine\n\nSPEAKER_01: forty so what were happening when you\u0027re in fight or flight your highest thinking party or brain the neocortex doesn\u0027t work so when you\u0027re running from a tiger you know thinking about philosophy in the human cortex is so big compared to other mammals that when the blood supply drops down in that part of the brain it really drops down and your thinking centers are markedly compromised and you\u0027re just reacting you\u0027re not really thinking and so says so much stronger than your conscious brain will use conscious control or conscious interventions or try to counteract that it\u0027s a mismatch you cannot do it\n\nSPEAKER_00: this is fascinating i am so excited to hear you explaining all of this is so validating or us going through this to hear this coming from a physician from a surgeon from you know medical a scientific perspective because it can all sound a little bit that oh you\u0027re in all this pain you\u0027re you have a world of symptoms and you have to look at your emotions and you know this is your path out of this so i\u0027m wondering how many other doctors in your experience are aware of this approach to healing in the in the latest science and embrace it and use it\n\nSPEAKER_01: well i would say some i see very few surgeons i would say very very few surgeons and i was helping hundreds of patients literally go to pain free so my symptoms are gone and i fight out the science behind this and so i translated it into a book and a website no of course where people systematically go through learn the tools to calm the physiology and reroute it reroute the nervous system in the pain results and it happens hundreds and hundreds of times so i\u0027m watching people being badly damaged by spine surgery with very expensive long term i mean really devastating results from best i surgery i was a guy who was trying to clean up the mess and it wasn\u0027t solvable most the time so i get somebody before they had any surgery at all it was just magical i can tell you some stories in a second but the bottom line is that\u0027s very self directed and i don\u0027t think as you go too much in the details of the course now because the idea is it\u0027s about learning skills so what\u0027s evolved in the last couple years is that the body knows how to heal you know sort of a trice saying but it\u0027s really true is in threat physiology your body breaks down right it was if you sustain it really breaks down and then weight lifters lifting weight he or she has to rest for the most muscles to go back up there was overtraining actually breaks your body down they think if your body\u0027s in constant fight or flight your body\u0027s going to break down so what happens is always through physiology again physiology is how the body functions in their city physiology with body rest regeneration heals so some ratio of enough safety compared to threat the body heals itself so the healing that occurs is far beyond what i can do is far beyond a self help process and not only do people go to pain free usually all the symptoms resolve and they thrive in a little possible that happens over in over and over again so i could most of practice in two thousand and nineteen because so frustrated seeing so many people badly damaged by spice or three and seen so many people go to pain free with minimal cost no risk self directed process you do not need a pain clinic to do this i said i had to quit so that was in two thousand nineteen i have not made nearly as much progress as i thought it would but all the medical fish is flat out digging in his heels that\u0027s a long answer to that question there is not buying it and the thing they ranch for a second we learn this in college actually learns in high school is the physiology class right temperature blood pressure heart rate all these things are in physiology class in college a little bit more in medical school we learned about the human body at a very very deep level and the physiology is where it happens because the body functions with physiology becomes ill when it dysfunctions so we\u0027re focused on structure and so the problem is we\u0027re just called medically unexplained symptoms by chance m u s sounds familiar well started out in two thousand and two in the failure practice literature you say well we know you\u0027ve all these symptoms we kind of we can\u0027t find a source we call it medically unexplained symptoms was it terrible diagnosis because people give up hope ok they know it\u0027s going on there does the idea of the diagnosis was to acknowledge the fact that you hurt which is a start and we nothing we can do but can help you cope with it so that\u0027s wrong if we look at the physiology of stress and again stress is the problem coming in going to fight or flight because of stresses and threats you look at this is physiology of sustained stress everything is explained every single symptom i had is gone how can that be every cell in the body\u0027s bath in this chemical environment you know different organ systems have different functions so i migraine headaches they\u0027re gone but what happens is that the blood vessels of the brain get inflamed transmitters neurotransmitters are off and when you really regulate your physiology back to safety that goes away my ears were ringing tinnitus for many many years twenty five years i thought from construction work days and i do have some hearing loss it\u0027s gone is a renda symptom sounds sort of mild but the chronic really bothers you it\u0027s gone and the reason for that again i can theorize on it but it\u0027s gone lots of people in my course have had the tennis disappear but again fight or flight your nervous self has inflammatory cells your brain your brain itself is inflate so it takes less stress to set off this the sensations than the nerve connection in your body doubles so you have a hyperactive ear and receptive system in your ears ring my feet would burn like crazy especially at night that\u0027s gone skin rashes would pop up over my body that\u0027s gone and back pain neck pain that\u0027s gone so you say well how can that be physiology covers every cell in the body and if you come physiology all the symptoms disappear one person twenty four symptoms gone another gentleman had twenty surgeries and twenty nine surgeries in twenty years and his suffered it was just a huge mess of his life and he started work with my stuff about ten years ago and in about a year who pain free and ten years later he\u0027s living the best life of his entire life that\u0027s after twenty eight surgery there\u0027s two parts to healing one of them is to learn to your survival physiology is keeping you alive it\u0027s a gift so anxiety anger are gifts i mean how you survive without anger and anxiety we would not so you learn to separate your identity from these stress reactions is we take your identity in we take your stress reaction which are intended to be very unpleasant you take them personally you don\u0027t feel good and a lot of mental energy trying to compensate for this bad feelings was supposed to be bad so as you separate denny from the stress reactions and say look just take a thermometer visually on the other on the opposite wall and we feel really anxious angry and frustrated just visualize how high this morris going in you should use the tools to drop it down and so that\u0027s one part of it the other half is nurturing joy so again you can nurture joy if you\u0027re fighting stress not possible you can think you are in trying to distract yourself but it\u0027s such a mismatch it never works but if you try to run your pain stress physiology yes you reinforce it so we call it self induced deep healing as if you train your brain is a trained learned skills non positive thinking by the way which is another disaster but you sort of train your brain to be less reactive to the pain issue training to be less reactive is when you fight it you really reinforce the circuits we talk about it he reinforces circuits so you learn a common physiology and then when you\u0027re on then you do what you want to do so the healing actually occurs as you start living your life on your terms not by fighting the pain so i have little saying is quit fighting darkness and just turn on the light so it\u0027s a bit more complicated that but not much and i\u0027ll just be one example to one model here so we can maybe go on the the mental part of the conversation as far as these repetitive thought patterns but you know we came up with a model called dynamic healing so every living creature has sensory sceptors that takes input from the environment whatever environment that is you have the century input touch sound sight feel all these different sensations so those come into your nervous system and so you have your input your nervous system which processes all this and you have your output which is the physiology either threat or safety so there\u0027s ways of process your stresses differently so they have less impact on your nervous system there\u0027s ways of making nervous system going from hyper reactive to call and there is a physiology there\u0027s things you can dress lee learn the physiology on the input side of the good the goal is just more safety physiology so all these interventions come towards one goal so it\u0027s never one intervention solves a problem is a combination of just a life using different tools in your times of the day to calm down your physiology so for instance which you want to sample is if you\u0027re my office and you have chronic pain as you look when you walk in the office you\u0027ll never discuss your pain ever with anybody and because what\u0027s as input was input doing your physiology right so it is a bit deeper than there is just your physiology i\u0027m sure never discuss your pain or discussion medical care no complaining no criticism giving unasked for advice and no gossip because what\u0027s it doing to your physiology right so that\u0027s one of the basic cardinal rules are simply no negativity and often we sure in some workshops back east those were a carnival rolls and it takes about six weeks actually slow that down because we all like to complain this is where we are and it\u0027s for hard especially the gossip part of people used to gossiping but it again fires a breath of physiology especially when you\u0027re in pain you are complaining about the doctors medical system there\u0027s illnesses you complain about when you\u0027re in pain and the are legitimate complaint but you want you do you want your brain on the problem or do you want to solution so this one example how we work on input for output for instance you probably have done this a lot with your clients where you do breath work like slow breathing stimulus was called the biggest nerve which is anti inflammatory or rubbing your forehead stimulates the fifth cranial nerve i\u0027m sure the same fifth grain or in the forehead i actually took that little tool for my cat so i can call my cat down really quickly by rubbing her forehead so also sound there\u0027s some pitches of music that really stimulate the biggest nerve and actually causing to calm down issue lower the physiology is for is the nervous system itself you make it more resilient was sleep is number one you have to sleep diet you know to find her diet and exercise are the three big ones as far as the nervous system so your sister be call or hyperactive and sometimes you come from an abusive environment or system to be feel safe so i taking a feral cat and try to calm it down you can\u0027t talk to it you said to teach it how to feel safe so that\u0027s where the dynamic healing you have your input or stresses your nervous system or copy skills you have your physiology the output and we have threat physiology then you have symptoms so the root cause the root cause of illness is interaction between your stresses in your coping skills so we\u0027re treating only the symptoms so the root causes and we close being address so it\u0027s like trying to put on an oil well fire with a garden hose you know the fuel keeps coming up and you\u0027ve got to go to the root cause by dealing with so when we teach people to learn these tools about ten or fifteen minutes a day that\u0027s it we try to really really learn about pain or really solve the problem you\u0027re actually reinforcing the pain here\u0027s learning tools that use every day all day long you should not be work because one of the end to those anxiety is play is you think sort of playful curious attitude towards it that really comes of the physiology that\u0027s whole different topic they were the bottom line is that in a killing motor you change the input you increase your nervous system learn to lower the threat physiology then the symptoms resolve themselves i covered a lot of ground there\n\nSPEAKER_00: i was just thinking i think you\u0027ve covered everything that i\u0027ve been working to cover on this channel since it started we might just shut down the channel after today this is i think a mic drop moment\n\nSPEAKER_00: you\u0027ve explained it so incredibly well and light bulbs are just going off all over the place as even thinking with my own journey for my first couple of years i was really laid out and really symptomatic and then i decided for a year that i was going to stop trying to fix myself because i didn\u0027t know what else to do and i wasn\u0027t going to talk about it i made a rule because i was tired of it being my whole identity and it was interesting it wasn\u0027t the whole fix but in that year just by stop trying to fix it and never talking about it again i started to feel better\n\nSPEAKER_00: one of a zillion little you know light bulb moments that were going off for me as you\u0027re talking about i think though i mean preaching to the choir here as well as to you know a lot of the people that watch this channel are pretty right up and up to speed on the science behind this but still understandably many have not been given this information or are just hearing it for the first time and it sounds a little bit off because i still hear every day from people i have all these symptoms i\u0027m really struggling to believe that i\u0027m going to be able to get rid of them all without surgery or medication so what was you estimate what percentage of chronic debilitating symptoms are alleviated with surgery or medication\n\nSPEAKER_01: memory treating symptoms so surgery symptom and so my one pain of the body so to me a long time to figure this out so let\u0027s take back pain there is not operation should ever be done with back pain ever works the reason for that is first of all the same acute lumbar strain you strain your back and about half of people by the way this developing backstrain it goes on to be chronic so the m r i scans what happens there\u0027s a pain center in the brain lights up back pain in about six or twelve months actually shifts to the emotional center the same pain but a different driver is a definition of chronic pain is a embedded memory that becomes connected to more and more life experiences and the memory cannot be erased and it cannot these pain circuits are absolutely permanent is similar to phantom limb pain or leg is cut off here why is the pain still there the structures gone in so the brain if you think about this carefully every living creature to memorize everything all the time otherwise we don\u0027t stay alive you know when across the street we know we\u0027re not looking to the sun we know how to stay safe but your brain\u0027s taking it in if mission every second so which is really information it just ignores it because it\u0027s safe so the new comes up you have to analyze it but your brain memorizes everything but especially pain and so it sounds discouraging but he is the more you try to fight it and solve it the more you reinforce it so you really are going to get rid of these pain circuits you can walk through them you walk past them you can transcend but you can\u0027t fight them and so what you\u0027re doing is you learn to separate yourself from your pain in the first thing that happens by the way with mental pain and physical pain is that you change your relationship to the pain is the pain she or you\u0027re here\n\nSPEAKER_01: as you start getting on with your life the way you want to your terms that\u0027s the solution it\u0027s really is so from neuroplasticity standpoint by the way neuroplasticity i\u0027m sure knows it we do not i didn\u0027t know this medical school i\u0027m sure we even knew it back in medical school but your brain changes by the second we thought that the brain was static in sort of lost cells as you get older and it changes every millisecond so even right now both of our brains have changed and so what you\u0027re doing you\u0027re trying to direct the brain to change the direction she want and that\u0027s why if you start living life that you want and you quit fighting the old one that part of your old brain starts atrophy so the circuit is still there they can be triggered any time but they really attribute the point where they just don\u0027t bother anymore so it\u0027s consistent one example right now again i don\u0027t know if the eyes comprehensive depression o c d bipolar his metabolic inflammatory disorders they\u0027re not psychological so in zari is the term we use when you\u0027re fight or flight so it just describes humans have this description for fight or flight who calls it just a descriptive term is not a psychological diagnosis she learned to live with it be with it i don\u0027t like to embrace it but you do embrace it because it\u0027s part of keep you alive he just go on your way\n\nSPEAKER_00: we talk a lot here on the channel about the conscious brain and unconscious brain so what is the relationship between those two and why is it important to understand that when it comes to chronic conditions\n\nSPEAKER_01: well chronic disease is a state and dr navio at mitochondrial has shown that you have chronic illness is motor connect they don\u0027t heal she actually shift that state before you actually can move forward if you use an acute interventions for economic problem it doesn\u0027t work so what you\u0027re doing is learn how to calm down physiology and then move forward you know so the question was exactly what again\n\nSPEAKER_00: understand it we talk about some things happened in our unconscious brain and other things we happen in our conscious brain and we need to bring things from the unconscious to the conscious there i just i think it gets a bit confusing for people understanding the relationship between the two and you know how this relates to their symptoms and their recovery\n\nSPEAKER_01: so the unconscious brain keeps you alive we do not need conscious brain to stay alive so we use conscious brain you have to be careful because you know animals have consciousness also right our animals look at things analyzing decisions but they don\u0027t have thoughts they don\u0027t have language to put meaning to it so they still respond if we do not have a new cortex we still stay alive chimpanzees have ninety nine point nine percent of the d n a we do you have quite a bit of intellectual capacity but they don\u0027t have this huge neocortex so remember the unconscious brain is eleven million bits of your patient per second the conscious brain is forty that\u0027s it so you can\u0027t control it and so it\u0027s like trying to drag stir with handbrakes dr work with a conscious brain does it gives you the steering wheel you can steer and direct it wherever you want so your conscious brain will react to whatever you put into it again if you consciously decide to complain to be negative that\u0027s what\u0027s going to happen your conscious brain is respond to what you put into it so it\u0027s a forty bits of information per second eleven million you decide what you want to load into this thing if you\u0027re put loaded negative you have a massive survival reaction and so the other thing is that this is been also eight hundred which i\u0027m really disturbed about his house on a couple weeks ago but if you see somebody dangerous walking across the street your body actually responds first before you have thoughts it\u0027s the actually physiology first so it\u0027s about a one to ten second delay your body automatically reacted by the time you think about it so let\u0027s have a thoughts for second new book on repetitive i wanted thoughts and so what i learned in my own experience is i have full blown obsessive compulsive disorder which is marked by really extreme intrusive thoughts and most people don\u0027t have that but just by definition the way the brain works and this is where i think humanity\u0027s going to come up this different solution for this is that your threat physiology creates unpleasant thought because what happens you\u0027re the conscious brain is interpreted the sensations made by your unconscious nervous system we call it intraception so if you\u0027re buying fight or flight your conscious brain gives different meanings to these sensations you know as an in the same or a negative words you know sad shame embarrass all these different things are meanings we give to a physiology so the way your brain is working is that your your physiology creates the unpleasant thoughts then the thoughts themselves become input that actually strikes up the physiology this very bi directional and so after a while with repetition the thoughts become embedded in different triggers always fire the physiology vice versa so if you\u0027re anxious frustrated for any reason you\u0027re from negative thoughts then the negative thoughts can also become their own input so this one part is by directional that\u0027s very unique to humans so we\u0027re through unwanted thoughts or rumination why ninety five percent people ninety five percent of people have these things about seventy percent of people have a lot of destruction lifestyle i had extreme form showing about two or three percent population of extreme intrusive thoughts really negative really negative with all the physical symptoms i had the two worst parts my deal were these repetitive thought patterns they were just horrible so by the way is also direct relationship between thoughts and suicide actually attempted suicide miss whole thing and what drove me to that was the thoughts they just would not stop so i noticed over the years of people\u0027s pain would disappear their anxiety would drop and these thought patterns spinning away so forcefully my experience they actually disappeared they\u0027re gone but i could figure out why and so you have to understand is that there\u0027s a four part process when these thoughts so the miracle i just start with is that of a hornet\u0027s nest where the nest river is your system or your brain in the horse or your thoughts you know somebody shakes the nest the hornets are pretty unhappy is what we\u0027re doing right side fighting these hornets which is making them more angry the real interest which shaking the nest so the four parts of solving this pattern says number one separate from the thoughts that\u0027s where my friend is conducted behavior therapy comes into play if you heard six size call expressive writing if you work with that much so that separates you from the thoughts not solving them to say thought separation process and then the nervous system so the first of a separate from your thoughts calm physiology the third part destroy i mean dissolve your ego and the fourth partner plasticity so thought separations of first part where you learn to express and look at him mindfulness is the same thing you simply the thoughts are here you\u0027re here in common physiology is a stylish healing model we change the input the nervous system the output and what you\u0027re doing is mostly around anger so people are angry about a lot of things they always have been particular this day and age with a lot of sensory input we\u0027re overwhelmed or frustrated we feel trapped and when you\u0027re angry your nervous system is really fired up so there\u0027s a bunch of tools i call it anger processing to calm things down is sort of beyond the scope of this discussion but calm physiology does actually critical so physiology drives the thoughts in medicine we\u0027re not addressing the physiology so do it in the summer of carnita processes to deal with these thoughts in not even the root cause at all the third part which made you know just go for this discussion that we develop an ego for a couple reasons one of them is our stress physiology is unpleasant it\u0027s just feel bad so we develop this story about ourselves to feel better about ourselves second of all we\u0027re mostly programmed by negativity right\n\nSPEAKER_01: we\u0027re raised by criticism do this do this should do this shouldn\u0027t do that so we\u0027re sort of programmed through our lifetime with negativity so we develop our own internal story about ourselves to feel better and then the third reason is we\u0027re competitive species like every other creature so we want to look good so we spend a lot of time building up this appearance to other people but also to ourselves to look good it takes a lot of mental energy to do that so on top of that we suppress negativity so the suppressed thoughts emotion really fire up this whole process or ruts and then it develops into mental what\u0027s called mental rigidity which is cemented in my anger is this really fixed view of yourself it\u0027s not solvable that\u0027s where conspiracy theories come into a big play with these thoughts about life in general that this and this so rigid thinking is a huge block to healing is a huge block to treatment you get a certain mindset and it\u0027s not so it\u0027s not changeable so that\u0027s the challenge we deal with now is if you\u0027re open to actually engaging people heal but the key issue is people don\u0027t believe it you mentioned earlier well what if you talk about this people don\u0027t buy into it well it\u0027s a problem so i ask people don\u0027t believe me so when you leave this podcast or tv show don\u0027t believe anything i said the key is connect to what\u0027s in there which is skepticism so i said you don\u0027t have to believe anything and david hanscom or the process or whatever it is believe that your body knows how to heal so connecting with what is is a huge factor so connect with your skepticism is actually the starting point you start doing the work now letting your brain start to change then the fourth part where the healing actually occurs we talked about this before you separate from your physiology over here because you nurture joy good food good wine good friends your brain develops that direction that\u0027s the definitive healing it\u0027s not by fixing the negative side it\u0027s by nurturing the good side so with these thought patterns you got your thought separation call the physiology the driving force the third thing which has to happen relatively quickly is kill your ego you don\u0027t need it you understand your three physiologies over here you\u0027re not taking it personally you don\u0027t need an ego it\u0027s a ways to think about it so think how much time we spend with me being king of this how much time we spend build up an appearance that we think is okay so that takes mental energy that my cat doesn\u0027t spend time with so you know she just gets what she wants anyway so she doesn\u0027t need an ego\n\nSPEAKER_00: so that goes so i\u0027m thinking about the people listening watching and i think there\u0027s a tendency for people to think i\u0027m somehow going to be the one person that this doesn\u0027t apply to so for people who learn what this is about who implement strategies who follow this course of moving forward i mean what percentage of people would you estimate that this could be beneficial for for people with these chronic symptoms\n\nSPEAKER_01: well i\u0027ll tell you that i don\u0027t know all i know that depends on this repetition so it depends how committed you are to learning the skills the focus is on the skills not believing so usually calm your physiology and let your body heal the hardest part of this project by far is people can\u0027t help but try to fix themselves and when you do that of course your attention\u0027s on the problem so we learn to be with the problem and then move a different direction so if people engage is a high percentage heal but it may take a week usually obviously being three to six months of repetition is a key issue here and it takes a while to learn how to play the piano learn how to become a professional at anything and people might say well i don\u0027t want to become a professional oh really i mean you basically become a professional at life skills so we\u0027re not being the highest level professional learn how to rig your physiology so i\u0027ll just give you one example i mean i have a lot of people in there the thought patterns are a little bit something i\u0027m learning i mean it\u0027s really tough to break through these thought patterns as far as the pain and anxiety that can drop down relatively quickly i\u0027m on a learning curve as far as the thought patterns but one gentleman who i saw a couple months ago he\u0027s a friend of a friend now i\u0027m not in clinical practice so i can give guidance so he was having surgery recommended a normal spine who\u0027s like a long spine fusion international he was suicidally depressed so the data has shown forever again the whole process evolved of just just by trying to follow the research about what we\u0027re supposed to do so none of this is something i made up or invented or some magic formula is just following the science so the data even if i didn\u0027t know any of those clear back forty years ago you don\u0027t operate on people that are suicidally depressed you just don\u0027t do that well that\u0027s being done all the time now and so that operation in that circumstance would have put him in and this is what it would show my practice so it started the process that i\u0027m working on about six weeks ago i talked to a couple days ago his mood is way better depression is lifted he\u0027s not suicidal the pain is still there but he doesn\u0027t react so much which is always the first thing with pain that is there doesn\u0027t bother you as much eventually as you keep going different direction informing new circuits in your brain those new circuits don\u0027t have pain so people do go to pain free and it\u0027s better repetition and learning tools but again we call it deep self induced healing if you allow your body be a state of physiology your body heals itself so this might be confusing but i\u0027m going to try anyway there\u0027s a concept of self help versus deep healing so self help helps symptoms and if you contribute contributed to healing but the idea of self help is i want to learn enough tools i want to be really good about processing pain because i want less pain the pain of the show so inadvertently self help processes tend to reinforce chronic pain so deep healing is learning to not react to the pain be with the pain and then go a different direction so letting go the fixing process is really challenging that\u0027s probably the biggest step is letting go\n\nSPEAKER_00: this is incredible i\u0027m just thinking this is a lot of information for people watching listening so if you\u0027re feeling like i think maybe i retained ten percent of that don\u0027t worry watch it again i\u0027m already thinking i\u0027m going to have to go back and replay this and i\u0027m wondering what resources what information what do you have available for people who want to learn more about this from you and get some support on their journey\n\nSPEAKER_01: so all my resources are on my website back in control com one word and then on the front page there there\u0027s a lot of resources we put up some books which really just nice summaries of the situation just to really a simple start to it i have a book back in control a surgery on a chronic pain and then i have a course called the doc journey direct your own care journey it\u0027s a computer based course and i recommend people spend maybe about ten or twenty minutes a day on it that\u0027s it it shouldn\u0027t be work should be curiosity what\u0027s going on look at it as just learning skills it\u0027s very self directed then i coach twice a week and tuesdays and thursdays at noon on a zoom call and so the coaching myself is not effective if you add the coaching to the course is very effective and so then i have all sorts of videos and blogs and probably too much stuff on the website but the core between the flip books the course the coaching is sort of in the book back in control get you started on what you\u0027re going to do incredible yeah\n\nSPEAKER_00: okay well make sure to have that all linked in the video description so people could check it out because you have hit the nail on the head for that all the key things that the experts that i bring on this channel talk about and explained it just also concisely so for people watching listening to yourself a favor take a moment look at some of those links because you know he\u0027s got the experience the knowledge and clearly a wonderful person so some really great resources there to make use of on your journey and i\u0027m also going to link if you\u0027re watching this and this is resonating i did another interview with dr howard schubner you might be aware of so i\u0027ll link that up on the screen as well if people want to check that out it\u0027s just really incredible and really validating to have so many knowledgeable physicians coming forward and speaking about this and just validating the experiences of people going through this because for many years so many of us felt lost and or told it was all in our head or we were just being lazy or maybe making it up so this is impact just not only the validation but also tools a path forward you can get better\n\nSPEAKER_01: howard schumer is a good friend of mine he\u0027s my mentor oh and we play golf together we stay each other\u0027s houses and stuff so he\u0027s wonderful he\u0027s very academic he keeps doing the research on it and he\u0027s really really wonderful\n\nSPEAKER_00: yeah he i\u0027ve only interviewed him the one time but i just thought the world of him and he is another one who is just really changing so many people\u0027s lives it\u0027s it\u0027s incredible the work that people like yourself and him are doing thank you so much for being here i really appreciate this every sentence of this has been gold truly valuable i really appreciate it dr\n\nSPEAKER_01: thank you i really enjoyed our time\n\nSPEAKER_00: thanks to everyone for watching and listening and hope to see you in this next also incredibly information packed interview with dr howard schieffner\n",
"span_text": "burns which is cognitive behavioral therapy i did have a psychologist and"
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
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"source_doc_content": "SPEAKER_00: do you know which book has been mentioned as the most helpful for recovery in the one hundred and fifty five recovery interviews i\u0027ve conducted so far if you\u0027ve listened to even a few you can probably guess what book that is it\u0027s become such a phenomenon that there\u0027s even a term for it doctors call it book recoveries you read a book almost always this one specific book and you recover if you\u0027re new here welcome i\u0027m raylan and don\u0027t worry in this video we\u0027re going to tell you what book that is each week here on the channel we dive deep into new recovery journeys from chronic conditions like chronic fatigue syndrome and long haul covid so we as a community can get inspired and learn from each other this famous book i mentioned changed everything for my guest today dr doug goufrida from the university of rochester after years of seemingly random unconnected health issues and unbearable back pain that he was told required surgery the information in this book didn\u0027t just help him avoid surgery and fully heal it also steered his career towards a whole new kind of research he now trains doctors to implement the same recovery strategies that have been so effective for him and so many others doug it was so great to have you here today thanks for doing this\n\nSPEAKER_01: yeah thank you thank you for having me\n\nSPEAKER_00: so you have had quite the journey with chronic pain and all of this so tell us about that\n\nSPEAKER_01: yeah sure so like a lot of providers i got into this because of my own chronic pain i had back pain i had a herniated disc with you know shown on an mri couldn\u0027t sit down for a year it was extreme pain and was going to get surgery while i waited for surgery i found a book by a guy named john sono a lot of i think a lot of your readers or viewers are familiar with and read the book found a therapist to do some of the harder work and my back pain was gone within a few months went back to all my activities play basketball sports and not only that but a lot of the other health problems i had suffered with for years went away i had arthritic knee i had what nowadays would be called ibs i think that was probably before that diagnosis existed this was over twenty years ago shoulder pain\n\nSPEAKER_01: headaches i mean you name it i had all kinds of stuff that you know one would go away and the other would come back i actually had heartburn so bad i had surgery for acid reflux which i wish i never had now because i clearly didn\u0027t need it causes problems for me now but yeah so everything went away i didn\u0027t do much with it as a practitioner i\u0027m a counselor but i didn\u0027t do chronic pain counseling in fact we didn\u0027t talk about it much with anyone because back then you know you talk about it with people they think you were nuts to say that something physical could be cured something psychological and so i whisper to people in the shadows about you should try this book but didn\u0027t do much with it and then a few years ago i took an administrative role at my university and it was one that was a very stressful i wasn\u0027t enjoying it and my back pain came back and so i had a conversation with my supervisor at that point to say look i can\u0027t do this back hurting it\u0027s clearly bothering me for a while she had a hard time letting me out of the role and finally she said okay fine don\u0027t want to do this what do you want to do then and i said well i want to do chronic pain counseling and it wasn\u0027t my area i had been studying how to keep kids in college that was my college retention and she said well great we have a medical center here if you want to learn something new you can find someone i\u0027ll actually support you to do a fellowship and so she supported me i found the fellowship at the university who does this work with people with seizures bill watson who\u0027s a psychologist who works in the department of neurology he opened me up to the whole world of what we\u0027ll talk about later which is istp focused therapy bill uses this with seizure patients about forty percent of seizures are not epileptic meaning there\u0027s no chemical activity in the brain indicating any seizures and they\u0027re what\u0027s called psychogenic seizures and they use the same emotion focused approach i\u0027ll talk about to cure people of psychogenic seizures so i studied with bill i got to learn from a guy named howard schumer who some of your listeners are probably familiar with alan abbas is another big person in this field did a lot of my own work learning it engaging in it did what\u0027s called core training and istdp which is a pretty intensive\n\nSPEAKER_01: three year training approach with a local expert named marvin scorman and then opened my whole private practice\n\nSPEAKER_00: wow and just try even i\u0027m still stuck on the point where they were telling you that you needed surgery because your chronic pain back pain and leg pain had been quite severe\n\nSPEAKER_01: i couldn\u0027t sit down i couldn\u0027t move i would be locked up on the floor for you know sometimes hours at a time i got out of my car once at work and dropped to the ground couldn\u0027t get up for i don\u0027t know a couple hours in the parking lot i mean it was severe and you know there was visual evidence to indicate there was a structural problem now what we know now is that\u0027s all pretty much nonsense my back looked the same before it hurt it probably looks the same now you know there\u0027s quite a bit of research supporting the fact that back shoulders knees change as we age they look different just like hair turns gray our backs get narrow separate show little cracks they don\u0027t that doesn\u0027t cause pain just like gray hair doesn\u0027t hurt it\u0027s a psychological problem there\u0027s quite a bit of evidence now indicating there\u0027s really no very little relationship between observed structural changes back almost everybody you probably show herniated disc most people over the age of thirty show one of these things that would be diagnosable but don\u0027t have\n\nSPEAKER_00: yeah it\u0027s interesting our understanding of chronic pain now because we used to think not so long ago well if there\u0027s no structural damage maybe this is a psychogenic thing but now we\u0027re seeing that there\u0027s very little correlation between the level of structural damage and the pain that you\u0027re experiencing or that the pain being an indication of a level of structural damage they just really aren\u0027t\n\nSPEAKER_01: radiologists can\u0027t tell from looking at images who has pain which should be pretty clear cut but it\u0027s not\n\nSPEAKER_00: so when you read dr john sarno\u0027s book what was it from the book that was resonating for you and making you think okay this might be what\u0027s happening for me\n\nSPEAKER_01: well the symptoms right the fact that i had always had something really since i was a kid stomach problems headaches digestive problems you know sleep problems it was always something one would go away and the other one so you just find this carousel specialists that are just looking at one particular body part that really resonated the personality characteristics i don\u0027t know if you\u0027re familiar with some of the things sorrow talked about but they\u0027re they\u0027re so true for me most of my clients that i see really highly motivated ambitious hardworking but also really uncomfortable with strong emotions we\u0027re the people that run around trying to make everyone feel better we don\u0027t like it when people get upset you know we can have a party and everybody has a great time but if one person is unhappy we\u0027re really upset about that those kinds of things\n\nSPEAKER_00: i know a lot of people watching will be familiar with the book and have heard about it but many won\u0027t have read it so the approach to treating this what does that look like from that perspective\n\nSPEAKER_01: well sorrow said that a lot of people could get better just by reading the book and i know you mentioned in one of your interviews with the fact folks talk to you about that too just the idea that it resonates with it this isn\u0027t a structural problem there\u0027s nothing wrong with physically i just have to get in touch with my emotions you know learn to not be afraid of things and engage in things in more gradual persistent way he said about eighty percent of his patients got better just doing that i wasn\u0027t one of them and a number of us the people that i see usually are you know they have read it they\u0027re familiar with it that\u0027s why they find me but they\u0027re still struggling and so what we engage with now is a process called tensive short term dynamic psychotherapy i do some of the other things that i think your viewers are probably familiar with brain reprocessing pain neuroscience education i think those are some of the buzzwords that i definitely use those tools but for me the core of the intervention is this emotion focused approach the idea is all emotions are healthy we\u0027re born emotional human beings with this whole range of really intense feelings that need to be there for us to transition\n\nSPEAKER_01: even things that we consider negative emotions grief loss intense anger and rage you know those things are all helpful to us to mobilize us to advocate ourselves but we learn early on often from our caregivers that some emotions are okay healthy and some emotions are really problematic and even dangerous and so we develop strategies sometimes even before we even can talk to adapt to our environment to protect ourselves and others from these emotions that we learn are not okay so we are born the most helpless creatures on the planet right if you watch a horse born you know they jump up and run away right babies are completely helpless our human babies are our entire existence depends upon between us and our caregiver and so we learn to adapt ourselves to fit in that environment to get the care sometimes this can happen where parents are ragers angry painful see all this fighting can come because of abuse but more often than not it can come because really good parents just are really uncomfortable with the fits that a kid throws or the range of emotions that a kid might show probably a lot of people have seen the disease movie inside out it\u0027s just a beautiful depiction of really good parents and teach a kid that where\u0027s my happy girl and you can\u0027t be upset put a smile on that kind of thing and so we learn to disconnect from these emotions to sit with the needs of our environment and we develop strategies to ward off these uncomfortable or dangerous emotions one of the strategies can be varied but for chronic pain patients it tends to be physical pain parents who might not be adapted handling their anger their rage fits become very mobilized when they have a stomach ache or a headache or hurt themselves and they learn this and so subconsciously we\u0027re able to transform this physical or these emotions into physical form there\u0027s actually quite a bit of mri research that supports this process which is really quite amazing that we\u0027re sort of supporting the things from you know the eighteen hundreds now mri research with people chronic pain versus acute pain looks very very different acute pain which they\u0027ll put someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your experience because he said you know back then you couldn\u0027t even need kind of whisper this in the shadows what\u0027s your experience now with people knowing and understanding and accepting this\n\nSPEAKER_01: yeah most of the folks that i work with come to me because they know and understand and accept this but it\u0027s it\u0027s and some folks can work through the process very quickly and istdp we call those low resistance patients they come in ready to go all these defenses have been lowered they understand what they need to do they trust me they trust the process and you can just see this transformation pretty quickly these are some of the more remarkable recovery stories you might see or very quickly we\u0027re able to like work through the little bit of defenses point them out they notice them we work together to kind of you know work through them and then these emotions can kind of come up other people it\u0027s more complicated and it\u0027s harder i was one of the people that\u0027s more complicated i still am to this day very guarded and defended i still am in therapy and i have a lot of challenges getting in a lot of the core issues and emotions but i\u0027ll tell you a little bit more about what the process looks like i guess what gets in the way so we might start talking about something it\u0027s not a big deal\n\nSPEAKER_01: in istdp we\u0027re always checking what do you notice in your body as you talk about this person\n\nSPEAKER_01: often our anger comes in and when we check into the body body doesn\u0027t lie brain will lie they\u0027ll say i\u0027m angry i\u0027m so mad\n\nSPEAKER_01: but we check in the body and often in the beginning you\u0027ll see tension\n\nSPEAKER_01: right what do you notice my stomach\u0027s tight i feel constriction\n\nSPEAKER_01: my shoulders you know those are the different places and that\u0027s anxiety they don\u0027t know they\u0027re anxious subconscious what they\u0027re anxious about are these feelings that ward off tense rage anger and actually underneath all of that guilt and so once they get to notice that they realize they\u0027re not really angry at all they know they should be but their bodies are really afraid about this feeling and so and usually the pain will start like in groups it\u0027s it\u0027s really quite funny to watch when i run through someone get activated you\u0027ll see the other people oh my god this chair you know to stand up adjust or you know they just get activated by other people\u0027s emotion and so we teach them that you know they might have to get up and go to the bathroom people with ip style coffee i gotta go to the bathroom that\u0027s a way to ward off the feelings another way is what we call cognitive disruption they lose their train of thought happens all the time or just talking about what did you ask i can\u0027t remember what you said that\u0027s that\u0027s a defense and so we\u0027ll point these out intellectualization well i need to just forgive them she had a hard life we get there istp gets tremendous forgiveness but you can\u0027t short circuit it with defensive behavior so once they are able to work through those real the somatic experience of anger and rage is often allowed to come through that\u0027s very different it\u0027s a looseness it\u0027s it\u0027s a warmth it wants to move and push up and out of the person we\u0027ll see them sign\n\nSPEAKER_01: that\u0027s an activation we\u0027ll notice hands moving clenching sometimes grabbing we watch the leg movement when you see activation and they talk about a warm loose feeling that\u0027s a somatic experience of grabbing\n\nSPEAKER_01: and sometimes we\u0027ll ask them they\u0027ll have visions you know quick images i have this picture person sometimes it\u0027s not even a person start to talk about it quickly go to primary caregivers people who use them it\u0027s called unlocking it comes out in its fullest form it is the most dramatic part of the healing process it doesn\u0027t happen in all cases but when it does it usually leads to some pretty dramatic improvements\n\nSPEAKER_00: what sorts of conditions or symptoms are people coming in to address with this\n\nSPEAKER_01: back pain knee pain shoulder pain headaches fibromyalgia so i didn\u0027t get into this you know i got in it more for the those kinds of issues my first two clients i saw both had fibromyalgia i didn\u0027t know much about it at the time this is going back about ten years but i had read some of schumer and lumbley\u0027s work that they had effectively so i started using it with them with an understanding to say hey you\u0027re the first people i\u0027ve seen with this i can\u0027t really promise you know what will happen i just know that other people and they both got better very very quickly in fact went back to their doctors and told them they were cured the doctor called me to say what what happened\n\nSPEAKER_01: this happened and as you can imagine after that my practice really picked up quickly so i have been working more with folks with fibromyalgia i take them readily because i do believe that it\u0027s the only thing that i\u0027ve learned that really can cure it at least you know keep in mind the people i see have been through everything else i\u0027m never the first stop usually the last so you know they\u0027ll come with all these other things that they\u0027ve done and tried a lot of frustration about it i started to work with people with long covid and me those were not on my initial list but\n\nSPEAKER_01: with long covid i was very hesitant because i didn\u0027t know what it was or what was going on last thing i wanted to say that this could be helpful there was no evidence out there and i had never seen anyone but there is starting to be some research showing that emotion focused therapy and helpful so i have started to see people with long covid and me and have been having some success with that as well\n\nSPEAKER_00: are you seeing a shift in the professional community in terms of accepting this sort of therapy and treatment\n\nSPEAKER_01: yeah that\u0027s been the most amazing thing as someone who you know went through his own process over twenty years ago and kind of as i said hid in the shadows with this it\u0027s it\u0027s really been incredible to watch the change in fact right after this i\u0027m going to switch to another zoom meeting and i\u0027m training doctors here in our local hospital on this as part of a community of us that\u0027s been doing this work so yes i get calls from doctors a lot now not just for you know training or teach me about this but can you see my patients because you know there\u0027s a growing recognition even in medical school now they\u0027re starting to get some there was no pain curriculum medical school and they\u0027re starting to have one now and starting to look to scientifically supported approaches back pain is not scientifically supported or back surgery the evidence shows that most people with back pain only twenty to thirty percent of them get better and most of them have long term problems after one of the biggest diagnoses now is failed back surgery syndrome just doesn\u0027t work in most cases and our approaches have much higher success rates that research is really supportive\n\nSPEAKER_00: so what do you think about the people out there that are maybe a bit resistant to this idea or reluctant to go into therapy because it\u0027s going to be a really painful thing to endure but yet they\u0027re still struggling with their health what do you think what do you think\u0027s happening there\n\nSPEAKER_01: yeah that\u0027s that\u0027s a good question dealing with emotions is never easy it is some of the hardest work that we\u0027ll ever do istdp is incredibly difficult approach it\u0027s incredibly supportive of people but it\u0027s different and i do liken it to you know some different therapies that people go to that they found helpful but don\u0027t cure them which i used to do cognitive behavioral therapy person centered therapy those were my approaches prior to\n\nSPEAKER_01: they were helpful but i liken them more to like a walk like walking is really good for it\u0027s great for your health right everybody should go for a walk and walk a lot and it\u0027s easy and it doesn\u0027t cause istdp is more like crossfit right if you really want to change your body going for a twenty minute walk every day is not going to do it you got to get in the gym and put the more severe work and that\u0027s what i like\n\nSPEAKER_01: a really supportive crossfit coach because the goal for us we have this threshold that we\u0027re working at right this emotional capacity that people have for these difficulties and most people with chronic pain or emotional thresholds very low and so what we want to do is increase the threshold gradually and our therapy should get people to the emotion that they can tolerate deal with without going over because it will have setbacks without staying too low because then we won\u0027t see progress just like good fitness right just take off and run a marathon after just walking ten minutes you would build up to it to your maximum capacity so that\u0027s the goal with istp so we do look to take people you know a little bit further every time without going too far that\u0027s difficult\n\nSPEAKER_00: and i suspect one of the biggest barriers for people is even before this because most of us think of our you know mental health and our physical health and those are two separate things and if you\u0027re going through major physical health problems addressing your mental health stuff is a nice to have when i was really sick i started going into therapy and counseling but it wasn\u0027t to make myself get better that wasn\u0027t my motivation it was just to help me cope with the sickness and keep me going until i found my physical cure so it\u0027s it\u0027s such a change in mindset and our understanding of what\u0027s happening to even get people to the place where they see this as a part of their path to getting better\n\nSPEAKER_01: yeah my clients will say that all the time people\n\nSPEAKER_01: say this looks different why didn\u0027t i find this my answer is always the same you find this when the time\u0027s right and not everyone\u0027s ready for this at this point in their lives and you know probably about seventy to eighty percent of my people get better but twenty to thirty percent it\u0027s not the right time for them and we\u0027ll decide together that it\u0027s not and one of the things i published a study on a group that i ran we were actually looking at data and one of the things we do notice is that people get better generally have a setback at some point as things start to get more difficult emotionally these defenses get really activated and their symptoms will flare up or new things will happen and that\u0027s the time that\u0027s the make or break time people who really believe in it and know that a setback is part of the progress we\u0027ll stick with it and work through it and get better and people that aren\u0027t so sure about this will say well this is just bringing up all kinds of stuff you know i\u0027m already sick you know now i got to deal with all these emotions too and they might be the ones that decide this isn\u0027t the right time for them people get better in my study were the ones that believed in it so much at the start that they worked through the setbacks and were able to make a lot of progress after that\n\nSPEAKER_00: well doug this is just incredible i just my head explodes every time i have a conversation with someone like yourself it\u0027s so amazing to have professionals out there who are aware of this and out there and available and helping people because\n\nSPEAKER_00: it\u0027s not the case just a very short time ago so i really appreciate you taking the time today to walk us through this and to show us you know the science behind it this is real this is helpful and it is that message that it is coming into mainstream conventional practices is really encouraging to hear as well so yeah thank you so much for this\n\nSPEAKER_01: you\u0027re welcome thank you for talking to me i appreciate it\n\nSPEAKER_00: yeah i\u0027m curious from the viewers what questions you have love to see it and what\u0027s your experience been with all of this what\u0027s your take and also want to send a shout out to channel member yousef david thank you so much you said for the support and joining the channel sending big hugs to you i really appreciate it and for people watching i know this is a lot to take in if you\u0027re not already on my mailing list i do send out a weekly newsletter that summarizes and bullet points kind of the key takeaways from the interviews if you\u0027re not able to capture them all so there\u0027s a link for that in the video description as well so yeah thank you again doug thank you to those of you watching sending you massive hugs i hope you enjoyed this video i hope you got a lot out of it and i hope to see you in this next one\n",
"span_text": "ut someone in an mri kind of apply heat to their finger in a way that doesn\u0027t hurt the finger but hurts a lot you see the brain lights up there\u0027s not one pain center like there is an emotional visual cortex or auditory cortex it sort of lights up all over across the brain but you put people with back pain for example\n\nSPEAKER_01: their brains light up one little teeny place called\n\nSPEAKER_01: you might guess what the amygdala does if you\u0027re not familiar it\u0027s part of us responsible for emotions anger rage\n\nSPEAKER_01: it looks very different so science is actually backing up the idea emotions can be transformed physical form\n\nSPEAKER_00: and we know all this now and we can have these conversations but with your"
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